Positive News

Noah & Naomi

Naomi is doing well.  She is over 30 days with no major seizures (praise the lord) & (keto diet)
She still has many challenges she faces each and every day with developmental issues, eye sight and wither her bowels; however she is doing much better.  She has a pretty full schedule with different types of therapy's each day.  We will be going back to Mephis in Nov for more testing and procedures.  We appreciate all the continued prayers and thoughts for her and our family.   She has taught us so many life lessons and we are blessed to have family near by to help out.  Noah has started kindergarten and  is loving school and is such a good big brother.  He constantly is helping out and concerned for her well being.  We are blessed to have such wonderful children,
God Bless

Better Days

Naomi is awaiting a special appt at the Dean McGee Eye Institude in OKC, OK.  Big thanks to Dr. Vold in Fayetteville.  We appreciate your determination in wanting to help Naomi.  Last few days have been very good for Naomi, her seizures have been somewhat under control and she has had lots of energy and been a very happy girl.  The Ketogenic diet has show some signs of success; however we are still in the honeymoon phase and she has a long way to go.  We work daily with Neurologist, Dietitians, and Doctors to try to give her the best quality of life possible.  In the end we are trusting God that he will be the ultimate physician.  Thanks for your thoughts and prayers for our family!

Ketogenic Diet- Little Rock May 14, 2012

After 2 days seizure free- 4 come before noon:( ..Please pray for the Keto Diet to work.  We have been told by medical professionals that in 1/3 of kiddos it totally stops seizures, 1/3 helps control, 1/3 does nothing.  We are Praying boldly that Naomi will be in the top 1/3!  Please pray for momma and granny in Little Rock with Naomi.. Noah and I are home as he finishes last week of school, then we will join them.  She will be observed for 3-5 days in LR. 

http://en.wikipedia.org/wiki/Ketogenic_diet

Memphis TN - April 16th

Naomi Grace in La Bonheur Childrens in Memphis TN, Today Naomi Had MRI and  is  now  being monitored  on EEG.
We are optimistic about a 2nd opinion.  Please pray for our family and the doctors to find answers for her seizures.

5 Amazing Months

Wow, what an exciting 5 months!  Today was a long day as Naomi has been very fussy.  She has good days and bad days.  We recently traveled to Oklahoma for Easter and she did great.  She is still averaging 1-3 seizures a day.  We are in the process of setting an appointment in Memphis, TN with a very good Neurologist.  We are hoping for a better outcome with a 2nd opinion.  Her smiles throughout the day make up for all the tough times!  She is a very special blessing and we are blessed to be apart of her life.  She teaches us patience and to trust God on a daily basis.  We recently found a PT/OT that we are excited to be working with. She is an answer to prayers.  Naomi's muscle tone is underdeveloped and she has trouble lifting and holding her head or trunk muscles, we are optimistic that she will progress rapidly with good PT.  The future is unknown about her situation; however we are still trusting the Lord for more blessings along this journey with Naomi.

Visit to Arkansas Children's Hospital

We started the first of March in the Hospital. Naomi had a 24hr video EEG scheduled on the Neuro floor at ACH. Our Neurologist wanted us to go in for a long EEG so that we could hopefully catch some of her seizure activity to see if they have changed into infantile spasms . Watching her get hooked up to the EEG was really hard, but the ladies that were hooking her up were really fast and really nice, so that made it easier. Noah went with us to Little Rock, we didn't want him up there to see Naomi scream, so Doug took him downtown to the Rivermarket and they went to eat and walk around.

That night Naomi and I stayed up at the hospital and Doug and Noah stayed at a hotel. She had a few seizures that night, so glad they caught them on the EEG. I'm so sad that I was wanting her to have a seizure, but just so that they could find out what kind they are. Naomi got some rest but it was hard with the tech's checking her vitals every few hour, and the 5am blood draw. They sure do know how to draw blood on babies, only one stick they are amazing, everywhere else we go it takes them three times. We had great nurses though, some of the ones we had last time we were in the hospital. They took such great care of us. I really felt the Lord's hands over us during that time.

The next day Noah and Doug got to spend it at the Children's museam. Noah loved it, he had such a blast! I'm so glad they got to spend the day together. And I'm so thankful I got to have some Naomi time.
S
The Neuro team came in and talked to us about her EEG findings. They said she is having complex partial seizures that change into infantile spasms halfway through. They said her phenobarbatol level was very low so they wanted to go ahead and take her off of that medication, and they wanted to increase her Keppra. Our Dr. here in Lowell consulted with them over the phone. She really likes to use Keppra because it doesn't have any severe side effects like all her other medication. Also we talked to them about starting her on the Ketogenic diet, which is a high fat low carbohydrate diet that burns ketones for energy. We talked to the nutritionist about starting the diet, which would be a special formula called Ketocal. She said they have a lot of children on the diet that have very good results with seizure control, much better than even medicine. We are considering the diet, but it does have some side affects as not being good for the kidneys. Also she has to be in to hospital for a few days when we start the diet so that we can monitor how she handles it. We are still considering trying to see about going to the Mayo Clinic so we are not sure about starting the diet yet

. We have lots of things to pray about. But we are resting in the Lord's arms, he is holding all of us, knowing that he has the perfect plan for Naomi and her care. My sister shared this with me and I really enjoyed it, "When you encounter unusual circumstances and problems are are bewildered and feel like collapsing, just remember, "Why not Praise?" here is the golden opportunity. If you offer praise at that moment, God's Spirit will operate in you, open doors." Praising the midst of everything seems so impossible, but thanking the Lord that he is still in control.

Welcome!

We just started a new blog to document Naomi Grace's journey. We know there will be ups and downs, but so thankful we have such a wonderful God that loves us and will always take such sweet care of us.  I will also probably be posting some things about our family on here as well. Just wanted to let you all know about it. I still have a lot of work to do on it. Enjoy!