Memphis- Vagus Nerve Stimulator

Naomi has been struggling these last few months with really bad seizures, that just seem to get worse no matter what medication we try. Also she has been struggling eating as well. Even though she was only allowed three pudding consistency meals a day , she was coughing a lot while eating which is a sign of aspiration. She has had a few close calls with chest congestion, but never pneumonia. I'am thankful everyday for her g-tube, which allows her to get all the fluid she needs and also and her calories and medicine she needs.

We decided that we needed to go back to Le Bonhuer to have her video EEG monitored, and to also have a swallow study. We got admitted on April 22nd. Entering the 7th floor we were immediately greeted by the seizure alarms going off in hallways, for those who have never heard it would think it was a fire alarm. It used to seem scary and sad to me to think that every time it went off some child was having a seizure. But that is why families bring there children there , to have a seizure and to catch it on EEG. It's a horrible thought to want your child to have a seizure, but you want to doctors to catch what has been going on at home. All the nurses and doctors were so sweet and caring it was so bittersweet to see them again. It seemed like yesterday we were here for 17days when Naomi got her Gtube.

Naomi had her swallow study on Monday at 1, she was hungry but when we went to give her the barium she clamped her mouth shut, usually I can get her to eat anything. She did not want it, but finally swallowed a bite, and it went down great. Then with the second bite he had aspirated it and was letting it sit there and not coughing it out , the speech therapist and also the Radiologist who was performing the test did not want to continue any longer. She then talked to us for a long time about our options. She said with Naomi aspirating on thick consistency she should no longer eat by mouth. My heart was broken for baby girl. She loves to eat, and I feel some of the only words I know she understands because she always starts moving her tongue and smacking her lips when I say food or time to eat. I loved feeding my baby, it was one for the joys she had. I hated that it was being taken away from her, but had to keep trusting and know that The Lord has an amazing plan for Naomi. As I could not stop the tears from falling, our speech therapist was so upset and had to walk away, she loves Naomi and has always done her swallow studies and was so hopeful for her, she didn't want to cry. She gave me hope and said that its not over and that we can try again. The rest of the day was hard because she couldn't eat and wanted to so badly. Doug an I took turns eating out in the family room, so that Naomi couldn't smell our food. Sometimes I felt so guilty eating, but knew that she was getting food the healthy way and she was not aspirating.

Naomi was hooked up to EEG that afternoon where they saw lots and lots of the seizures that she was having that evening and the next morning. The next morning we met with the Neurologist, she saw lots of seizure activity, we talked about different med options, which most of them are black box warning for under 2 years. She also talked with us again about the VNS(vagus nerve stimulator), which we talked about prior to coming as an option we may want, and they put Naomi on the books with a Neurosurgeon named Dr. Einhouse, who we also met with. We really liked her and we decided that we would do the VNS surgery, instead of trying all these medications that could cause liver failure. We wanted to try something with with no drug side affects. The chances that it works are different for everyone and it takes time to work.

Naomi's surgery was on Wednesday, our Neurosurgeon wanted to pray with us before surgery, that was such a blessing!! That has never happened before. The surgery was a little under two hours, he came out and told us everything went beautifully and she was in recovery and we could see her soon. She never has come out of anesthesia well, she was so sleepy. She slept most of the afternoon and woke up that evening. Since coming home Naomi's seizures have been the same with a few days worse than others. We are still hopeful for the VNS to start working. We are thankful for everyday and every blessing that The Lord has given us. We know that Naomi is here for a reason, and she has a purpose, we are so blessed The Lord chose us to be Naomi's family. We are so thankful for our support system, our Family, and friends, and our extended family of those we have never met but that stand with us in prayer and that love our sweet baby girl. We love you all! May The Lord continue to bless you all .

Donations for Naomi Grace

We appreciate all the prayers for Naomi over the last year.  If you should feel led to help us with some medical expenses,equipment and care.  Most all of Naomi's medical bills have been covered by AR Kids Medicaid Program/Tefra, which is a great program for children with special needs and we are very thankful for these options.  However they will not cover any Mobility/Chairs/Wheelchairs until she is 2 years old, then it may be possible to get some help.  Naomi is due for a new mobility chair, as her infant stroller does not support her, the cost for this chair is $3,900 it is a very specialized chair that would give her much more support and allow us to move her without injuring her.  Above is the picture of the exact chair she will need for the next 12 months or so.  We will also have vehicle modifications with adding a mobility lift to our van to transport her chair which will be around $6,000 to add to our vehicle. We are trusting in the Lord he will continue to provide for us as he has thus far.  If you would like to donate to her fund, just click on the secure Pay Pal link below..

Thank You & God Bless,

Doug, Sara, Noah & Naomi  

17 days @ La Bonheurs Childrens Hospital in Memphis, TN

   
A few weeks prior to our visit in Memphis we went to Arkansas Childrens Hospital for her Spasms and a Neurologist had advised us to start her on Sabril/Vigabitrin, a medication often used for spasms. After the second day of being on the medication Naomi lost most of her muscle tone, and didn't want to eat much at all. We cut the medication in half, but still didn't see much of a return in muscle tone. She started to eat better, but was choking a lot on her food. Also her spasms still had not improved much. We decided to get a second opinion. 

                

 We started Naomi's stay in Memphis on Oct.22nd. We were scheduled to stay for a three day EEG consultation with Dr. Kate Vanpopple, an Epileptologist. Naomi was taken completly off of Sabril, and Keppra after a few days of being in the hospital to see if that would help with her tone and eating. We had a swallow study while in the hospital, and she aspirated really bad and couldn't catch her breath and about five nursed rushed in the room. They had to suction her throat and nose and hooked her up to oxygen. It was so terrifying to be holding her and seeing her struggling to even get a breath, and not be able to help her. After the suctioning and oxygen, they did a chest x-ray to see if it was in her lungs, and it wasn't. They started her on breathing treatments, and left her on oxygen for a long time after that.  After that they would not let her have anything else by mouth, they put in an NG(Nasogastric tube) down her nose so that she could get her Ketocal. They wanted to wait five more days till the Sabril was out of her system to see if her swallowing got any bettter. That was the hardest time for Naomi, because she loves to eat. She lets me know she is hungry by moving her tounge in and out, she also does it whenever you say the word food or eat. Also we had to eat in shifts out of the room so that she couldn't smell the food because she wants to eat when she smells any food.

 The big day came for her second swallow study and her daddy, pawpaw, and bubba came back to Memphis. On all forms of liquid she aspirated, we watched on the screen. Our heart broke more and more each time. As she started trying the food she also kept aspirating some, until she got to the thickest form of baby food and she PASSED, it was the only thing she didn't aspirate. It was very heartbreaking for us to watch her struggling so much to eat. We then were advised by Speech therapists and doctors to have Naomi get a G-tube to get her main fluids. We were prepared for this, we thought, but you can never really prepare yourself to go through this. But we knew that we needed to what we thought was the best for Naomi, since it was not safe for her to continue aspirating, and we weren't sure when she would get her tone back. After much prayer and consideration we decided to have the G-tube done. We met a family while we were in the hospital that had a daughter who had her G-tube placement a year ago, and they told us there story about how they really fought with getting one. It was so great to be able to talk to a family that love the Lord and has gone through what we were going through. I really feel as though the Lord brought them into our lives. There daughter doesn't have CDKL5, but she does has CP, and seizures, so some similarities. And they allowed us to meet there daughter Nowell, and to see her G-tube and how they used it. It made everything a lot less scary. We also had someone from the Care team there make Noah a Monkey with a Mic-key button like Naomi will have, and also give him some books and coloring books about it. He really liked it, and listened, but didn't ask to many questions then, I think it was a lot for him. 

We had Naomi's G-Tube surgery on Nov.5th. It went very quickly, and they said it went perfectly. After the surgery, we got to go into recovery and see how she was doing. Her vitals were great, but she didn't want to wake up, she opened her eyes a few times, but didn't wake up till later that night around 11pm. She woke up screaming, and they gave her Morphene, which made her try to rub her face of, and her spasms were so horrible she had so many, and didn't help her sleep at all, it was a rough night for our sweetheart.  The next day we tried a Loritab and she finally got some rest and relief from her pain. Now we know that she doesn't do well with Morphene and won't ever give it to her again. Most of the day Tuesday she slept and cried everytime she woke up, because of pain. Wednesday her pain was so much better and she was starting to smile some again, brightening everyones day! Also the Drs talked about letting us go home that day, since she was doing so much better. She was still having spasms, but Dr.Vanpopple was hopeful that a seizure med called Topomax and the Ketogenic diet would help to stop her spasms. 

We were released on Nov.7th, to go home after 17 days, and one day before Naomi's 1st birthday! We were so thankful that we got to be home for her birthday. She was so happy to be home!! She starting doing so much better when we got home. It has been a hard adjustment for us all, but mostly for our Naomi. Her G-tube is healing so great, it looks wonderful, and she is gaining weight! She is also still having spasms, and they seem to be getting worse. We are going back to Memphis this Thursday, because we have follow ups with Neurology, and with the g-tube clinic, to make sure she is healing good. We will most likely be starting Naomi on ACTH-Adrenocorticotropic Hormone ACTH is a hormone made by the pituitary gland. It stimulates the adrenal glands to make and release additional cortisol, which acts much like prednisone. ACTH has been proven to be slightly more effective than prednisone, but it must be given as an injection, once a day for the first several weeks, then every other day. ACTH stops seizures in more than half of children with infantile spasms. We will know on Friday after she has another EEG if she will start it. Most likely we will be admitted Friday to start, they are already making preparations. 

We just want to thank you all for your love, support, and prayers for our sweetheart Naomi, and also our family. We just ask for prayers for Doug and Noah this week while my mom and I will be in Memphis. Noah is so strong, and such an amazing big brother, but he has a hard time being away from his momma. I know that he loves his sister very much, and prays for her all the time. It just breaks my heart when he asks me when will sister be able to walk. I tell him that the Lord has a plan for when she will, and we just need to ask him for healing. We continue to trust the Lord, and place Naomi in his hands. We know that he has the best plan for her. We treasure each smile and each time she has an accomplishment. Every day is so much more precious with her in our lives. She completes our family! 

Back in Little Rock

Naomi had a 30 min EEG in Lowell that showed that she was having infantile spasms.. We went to Childrens in LR to see Dr. Sharp.  After 24hrs of being hooked up, he came in with the news that her EEG did not look good and that she was defiantely having Infantile Spasms.  He have us 2 option's on Medication vigabatrin or ACTH.. His recommendation was vigabatrin.. So we started her on this medication.  She could not handle the full dose so we had to cut it in half.  She became very lethargic and did not have a desire to eat or really do anything. She is having trouble with eating and it appears to regressing her developmental progress?  We have contacted Le Bohners Hospital in Memphins Tn and will be going there next week for 2nd opinion and to meet with Dietitian to try to Dial in her Keto Diet better.

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