September 2008 - One of Mommy's favorite photos showing Julieann's heart warming smile.

 

 

Sweet and Lovable, a Delight to Everyone
Julieann, the eighth of the Green children, was born May 2, 2008. A delightful baby from the beginning, Julieann quickly stole the hearts of Mom, Dad, brothers and sisters. In late October 2008, our precious girl was diagnosed with infantile spasms, a rare form of epilepsy. As her illness unfolded, we began documenting her progress on this page so that friends and family would know specifically how to pray for her. We are so thankful to the Lord that her outcome so far is very good. For now, Julieann is seizure-free. We know that the seizures could return tomorrow, or in 10 years - so please continue to pray for her.

 

October - November 2008

 

Saturday, November 29, 2008

 

Julieann's smiles have returned completely! She is a delight to us all!

 

Daddy playing pat-a-cake.

 

Julieann is still having restless nights due to withdrawal from the steroid medication and the seizure medication, but when she does sleep, we treasure the time holding her.

 

Thursday, November 27, 2008 - Thanksgiving Day

 

A wonderful, peaceful, thanksgiving day! After a delicious meal, the Green family played a game of baseball with Julieann watching from her stroller. Can you imagine the Pilgrims and Indians doing this for three days in a row (feasting and playing games)? After two innings, with our full bellies, we decided to head inside for a little afternoon rest. Please pray for Julieann and her ability to rest. This is the 5th day of the steriod weaning and her little body seems to be in constant motion. She is very hyper, cannot sleep, and seems very tense all day. We really don't know how long it will take for the medication to leave her system. She is still smiling for us and that gives us strength to make it through the days.

 

Wednesday, November 26, 2008

 

BLESSINGS OF PRAYER

 

Prayer makes the darkened cloud withdraw;

Prayer climbs the ladder Jacob saw,

Gives exercise to faith and love,

Brings every blessing from above.

 

Were half the breath that's vainly spent

To heaven in supplication sent,

Our cheerful song would oftener be

"Hear what the Lord has done for me."

 

William Cowper

 

We are so thankful for everyone who has lifted our family and Julieann up in prayer! We were very encouraged yesterday to learn that Julileann is seizure free for now. We still have some unanswered questions. Her repetitive behaviors do not seem to be disappearing. We know that because Julieann has had infantile spasms it puts her at a greater risk for autism. We emailed Dr. Park tonight some questions about her seizure medication and he said maybe we can wean her a little earlier that we thought. He doesn't want to see the infantile spasms reappear so soon. Please continue to pray for us during this journey.

 

Tuesday, November 25, 2008

 

It's hard to believe, but we have good news for our precious Julieann! Dr. Park found no seizure activity on her EEG yesterday or today! He has diagnosed Julieann with epilepsy and non-epileptic behavior. We believe the ACTH helped Julieann during the final weaning phase. Her repetitive head dropping and arm movements are no longer seizures. Perhaps she is copying the behavior from when she began the infantile spasms (West syndrome). Dr. Park wants to continue Julieann on the klonapin (seizure medication) for awhile. We're not sure how long that will be. She has a doctor visit the first of January with Dr. Park to see how she is progressing. Our job now is to monitor her for any signs of the infantile spasms reoccuring. The Lord has been so good to us! He has continuallly wrapped His arms around Julieann. His timing has been perfect with our doctors and the medication. When we thought things were looking bleak, it was then that He was relieving Julieann from her complications. Our thaksgiving this year will truly be one full of praise and thanksgiving.

 

Julieann happily awaiting 26 electrodes on her head!

 

EEG techs glueing the electrodes onto Julieann's head.

 

Resting after so much activity.

 

Daddy holding Julieann while on the EEG monitor. Pam, Dr. Park's nurse, passing the time away playing with Julieann.

 

Mommy and Daddy enjoying our wonderful hospital dinner. The MCG staff took such great care of us!

 

Mommy's view of Julieann's electrodes.

 

Daddy giving Julieann her klonapin early this morning.

 

Daddy teaching Julieann all the parts of the brain. Julieann so excited to be going home!

 

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All the nurses and techs waiting to hold Julieann. She was absolutely delightful the entire hospital visit!

 

Long awaited peaceful slumber. Heading home to many loving arms.

 

Sunday, November 23, 2008

Julieann had another "happy" day today. We were so thankful not to have to inject her with the ACTH. Thank you for all the phone calls and cards lifting up Julieann in prayer tomorrow for the EEG at 1:00 p.m.

 

 

Maybe tomorrow will bring some answers.

 

Saturday, November 22, 2008

Today was our first outing as a family since October 25, 2008! . Lincolnton had their "Pioneer Days" and we set up our goat milk soap booth. We've been so careful with Julieann's weakened immune system on the ACTH medication. Grammy and Grandpa came to help hold Julieann and keep her away from the crowds. I believe the fresh air was beneficial to Julieann. She was very happy the entire day!

 

 

 

 

 

 

 

 

Friday, November 21, 2008

 

We called Dr. Park today about Julieann's spasms. He wants us to increase her klonapin(seizure control medication) at bedtime. Pam, Dr. Park's nurse, said that Julieann's seizure activity now is really more than they hoped to hear. And so we wait for Monday's EEG. We need much prayer to make it through the weekend.

 

Thursday, November 20, 2008

 

We are so proud of Julieann! Today she rolled over for the first time. Through all of her infantile spasms and seizure attacks we have asked the doctor about any developmental delays and his response has been that we really don't know. So we were delighted to see her roll over with such enthusiasm today.

 

 

 

 

 

Only two more injections of the ACTH after tonight! Even though we have given Julieann her injection for 22 days, it doesn't get any easier. Her little thighs look like pin cushions. Her spasms have become more frequent throughout the days, and we pray the Lord will help us bear watching our baby deal with the attacks day by day, hour by hour. Even though her body is out of her control, Julieann's shining personality overcomes it all.

 

 

Wednesday, November 19, 2008

 

FATHER IN HEAVEN, WE THANK THEE

 

For mother-love and father-care,

For brothers strong and sisters fair,

For love at home and care each day,

For guidance lest we go astray,

Father in heaven, we thank Thee!

 

Ralph W. Emerson

Thomas snuggling Julieann like he does every morning.

 

 
 

Benjamin playing Julieann's calming music.

 

Sister love - the pictures say it all.

 

 

Even though it pains us to see Julieann having her spasm attacks, her smiles are returning now that we are weaning her from the ACTH steroid medication. Hopefully, after next Tuesday we will know the right kind of treatment for Julieann. The side effects of the ACTH (irritability day and night, weight gain, elevated blood pressure, lack of sleep, weakened immune system, blank facial expressions) have been difficult to bear.

 

Tuesday, November 18, 2008

 

Finally some rest. Julieann doesn't get more than 6 hours sleep in a 24 hour period. Early this morning before breakfast, after a long night of crying, Daniel was helping hold Julieann. She became so restful and took a much needed nap. Daniel seemed to get a little nap as well. We are all a little on the tired side at the Green house. Please pray that we can continue to help one another and maintain our strength during this difficult time.

 

 

Monday, November 17, 2008

 

An emotional day. Dr. Park confirmed what we knew to be true. The ACTH is not working. We began weaning Julieann from the medication tonight and will continue for the next 5 days. He said the side effects are too risky if we go on any further and Julieann is getting too big. He actually observed her "attacks" in the exam room and said they are not typical of infantile spasms (West syndrome) any longer. He believes she may have another type of seizure disorder. He has scheduled a 24 hour EEG for next Monday and Tuesday. Hopefully, the test results will give us some answers and help us determine how to treat her. Dr. Park said we may go ahead with the PET scan soon as well. Thank you to all who visit our website to know how to specifically pray for our family and little Julieann.

 

Julieann with Dr. Yong Park

 

Sunday, November 16, 2008

 

Today we took turns holding Julieann trying to make her as comfortable as we can during her spasms. Joseph has such a big heart for babies! He picked out a special horse toy for Julieann and put it in her hands. She seemed to really enjoy it. But most of all, she enjoyed gazing into her caring brother's eyes.

 

 

Grace is always eager to help with Julieann and tells Julieann of her plans for the two of them when they get older. The "ann" in Julieann's name means "favored Grace." We know the Lord has already formed a special sister relationship between the two of them.

 

 

We await our visit with Dr. Park tomorrow morning. We have more video clips to show him from this weekend of Julieann's spasms. We pray for the doctor's wisdom in how to treat our precious little girl.

 

Saturday, November 15, 2008

 

When Julieann is upset the only tune to calm her is "Come Thy Fount of Every Blessing". One of our favorite songs to sing to her with this tune has these beautiful words:

 

Hush my dear, lie still in slumber,

God protects you while you sleep.

He surrounds your life with blessing,

In HIs hands your soul will keep.

Rest my babe for God is with you,

He will never turn away.

His strong arms are always near you,

Love and trust Him all your days.

 

Julieann's rest has not been peaceful lately. We pray that she can lie still in slumber. God surrounds her life with so many blessings daily - the most important ones are her 7 brothers and sisters who can always put a smile on her face. And we know God's strong arms are holding her constantly.

 

Friday, November 14, 2008

 

A change of plans. Dr. Park decided NOT to wean Julieann off of the ACTH medication. Because her spasms have been more frequent, we have now ordered our THIRD vial of medicine. We have to monitor her closely this weekend and report to Dr. Park on Monday. We're praying her little body feels some relief soon.

 

Thursday, November 13, 2008

 

LOOKING UNTO GOD

 

I look to Thee in every need,

And never look in vain;

I feel Thy strong and tender love,

And all is well again:

The thought of Thee is mightier far

Than sin and pain and sorrow are.

 

Thy calmness bends serene above

My restlessness to still;

Around me flows Thy quickening life,

To nerve my faltering will;

Thy presence fills my solitude;

Thy providence turns all to good.

 

Wednesday, November 12, 2008

 

A difficult day. Julieann had many more spasms than we hoped to see today. It seems as though our baby

is somewhere visiting and we are waiting for her to return home.

 

Tuesday, November 11, 2008 - EEG, Meeting with Dr. Park

We appreciate all the prayers for our precious Julieann. Please continue to pray for her as we slowly wean her from the ACTH medication. Dr. Park was encouraged by Julieann's EEG today. He reviewed all of our video clips, and even though she is still having some spasms, we are hopeful that the medicine is working. We have another 10 days to go before she will be completely weaned. Dr. Park informed us that there is a 30% chance that her spasms will come back full force while she is being weaned. Then we would have to start the medication all over again,and that would be a very rough road. We pray for God's hand in her healing process.

 

A

 

Waiting for the EEG in Julieann's room.

 

 

Julieann did not like the nurses messing with her hair!

 

 

 

After the EEG, Julieann was devastated with her hairdo! We had to improvise with her favorite blankie.

 

November 10, 2008

Today we took time to "smell the roses." Julieann had another difficult night with no sleep . We called Dr. Park and told him all of our concerns, so he scheduled another EEG for 8:30 tomorrow morning. Hopefully the test results will show us if the medicine is helping her spasms and if we need to wean her from the ACTH and try another medication.

Julieann was comforted this afternoon watching her siblings play outside. We all took a break after lunch, no school, no cleaning, just focusing on the pleasures of a beautiful Fall afternoon which seemed to calm Julieann.

Her cheeks are sooo irresistible to Nathaniel. He calls Julieann "JOOOLIE" and loves to kiss her all throughout the day.

 

Thanks to everyone who has prepared delicious nutritious meals for our family. They have been such a blessing during this difficult time. Daniel and Carolyn have enjoyed reheating the meals and preparing them while Kenny and I have been caring for Julieann. We truly appreciate your thoughtfulness.

 

November 9, 2008

Julieann got a little more sleep last night, but still had spasms every time she woke up. The medicine is making her cheeks noticeably more jowly - more to love we say. Her day seemed to be a little better.

 

November 8, 2008
The past two days have been difficult for little Julieann. She cries and screams constantly throughout the day and night. Daniel and Carolyn have been wonderful taking Julieann for walks and calming her down for short periods. Due to her weakened immune system she has developed little sores on the inside of her mouth called thrush, making her uncomfortable during nursing. Kenny picked up her prescription for thrush late tonight. We pray she'll have some relief soon.

 

November 6, 2008 - Doctor Visit

We headed down to MCG once again to have Julieann's blood pressure checked and to meet with Dr. Park. He wants us to continue the ACTH until Tuesday. If her spasms have not completely stopped, he will probably wean her from the medication and then we will take "the next step". Dr. Park consulted the radiologists who did not find her MRI abnormal. He said the MRI at 12 months will tell us if surgery is needed in the future. We are disheartened that her spasms have not disappeared. We know the Lord is wrapping his arms around little Julieann.

 

November 4, 2008 - MRI
We took Julieann to pre-op for her MRI. After 5 attempts for her IV the doctor finally succeeded getting the IV through her pudgy skin. Dr. Park met with us after the MRI stating that he thought her test results were abnormal. He said we will have more testing in the future including a PET scan and another MRI at 12 months. We showed Dr. Park the video of her spasms, which have changed since the beginning. Now she bobs her head and her eyes roll. Dr. Park said the spasms are unique to each individual and they will probably change as she gets older.

 

October 30, 2008 - First Injection of ACTH
The first-line treatment for IS is a steroid called ACTH. Although it has been used since 1960, the manufacturer recently increased the price of a one-teaspoon vial from $900 to $23,000. Because of the expense, we had some significant delays due to insurance issues. But the ACTH arrived by Fedex today, and we went straight to Dr. Park's office for the first injection.

 

We were very hopeful. In much of our reading, ACTH works after the first few days. It seems to be an "all or nothing drug." Kenny feels comfortable administering the injection daily.

 

Saturday, October 25, 2008
Lately we noticed that Julieann seemed to be trying to sit up in her crib. Every morning, she would wake us up making baby noises. When we walked over to pick her up, she would lift her head and lay it back down. On Saturday, October 25, 2008, we were busy packing the camper and getting ready to leave the next day for Daddy's conference in Helen, then on to Virginia - the Shenendoah Valley and Lexington - lots of history. We were not able to take our usual fall vacation in 2007, so we were very much looking forward to this one. But our plans soon changed.

 

Around naptime, we noticed that Julieann's attempts to sit up were rythmic - hold breath, exhale, sit up for a few seconds, collapse, repeat. Although Daddy thought that she had discovered something new - like when she discovered her feet - Mommy knew something was wrong. We called the nurse, who told us that it would be best to visit the after-hours clinic just in case. Off we went to Augusta while the kids kept getting ready. The doctor, after Daddy showed her a video clip, tended to agree with Daddy but told us we should see Doctor Billingsley on Monday to schedule an EEG just in case. We came back home and laid Julieann in her crib for a nap. As she awakened, her little motions were just too much to bear, so we took her straight to the MCG emergency room.

 

The emergency room doctor told us that in his 37 years, he had never seen anything like this and we needed to find out what was wrong. Providentially, a neurologist happened to be in the hospital late on a Saturday night. The neurologist thought that her motions couldn't be seizures - too slow- but we definitely needed to run some tests. A few minutes later, we were admitted to the hospital epilepsy unit, and Julieann was laying patiently inside a CT scanner. The CT scan of her brain showed everything normal.

 

 

We learned that the head of the epilepsy unit, Dr. Yong Park, would come by to see her soon. I'm not sure when he came - the days have run together. When Dr. Park came to our room, I told him that I had some more video. He didn't need to see it, because he had already watched our home video and knew what the motions were - Infantile Spasms (IS). We had a name for it now, which at least gave us a starting point.

 

Daddy: "So what does this mean - long term?"

Dr. Park: "We need to run some tests and find the cause first, then we can talk about long term"

 

"Some tests" meant bloodwork (done), CT scan (done, looks good), an EEG (to look for abnormal brain activity) and an MRI (scheduled for Monday). A nurse came in and attached 28 electrodes to her little head. As always, she was an absolute angel for the nurses.

 

 

The EEG was turned on for a 4-hour recording. Although the nurse told us that it would be best to avoid scaring ourselves by looking on the internet, it was too late. We read that infantile spasms were a type of epilepsy. Although her spasms looked minor compared to a grand mal epileptic seizure, infantile spasms can be much worse - possibly causing severe brain damage. We found on the internet photos of EEG's for children with IS. When they turned on the unit - there they were - everytime her little body had a spasm.

 

But we still had hope - some children managed to come through this with little damage. And the MRI, scheduled for 3 pm on Monday, would help us to have even more hope, when it proved that there was no physical damage to her brain. At 2 pm, though, the nurse came to tell us that they were having trouble with the equipment, and we would have to go home and reschedule - for next week.

 

We were discharged on Monday. Mommy felt a little uneasy. When we were at the hospital, we were in the care of doctors and nurses who specialize in epilepsy. At home, we didn't know what to expect. Do the spasms hurt Julieann?