We had what was supposed to be a 48 hour EEG on Monday. When the neurologist ( same practice but new to us) came in on Monday he decided to order an MRI for Tuesday afternoon. On Tuesday he stopped the EEG because he said that her jumps aren't really seizures. I'm confused by this b/c I don't know how they could go from being to seizures to not being seizures and if they're not then why do they still want her to be on seizure meds? Anyway he said that the reason he wanted to do an MRI is because her brain waves on the EEG were slow for her age and she seemed to have some characteristics of a couple rare disorders that affect the white matter in the brain. I'm still not totally sure what the white matter is or does. She came through the MRI fine and after his initial review of it he said that although there are some abnormalities to the white matter they appear to be there from way back and don't appear to be these rare disorders. He said he may do some further testing just to be sure but he wanted to see what the full report of the MRI said. So we left the hospital with even less answers then we went in. Although I was glad to get to come home a day early, I was/am a little depressed that everyone knows that something is wrong with Hannah, but yet can't figure out what exactly is wrong and certainly not how to fix it. Please pray that 2009 will be a year of answers and healing for this precious child. I am so glad 2008 is almost over and praying that 2009 will be better. Thank you all for being so faithful to pray for Hannah and our family. We covet your prayers.

Hannah's been pretty sick this week. I was scared to take her to the Dr b/c Thursday was my birthday and last year the pediatrician said " I think she's blind" on my birthday. That started this whole roller coaster we've been on this year. When she wasn't getting any better I finally took her on Friday. Turns out she has a double ear infection and bronchitis. Poor baby is absolutely miserable. Please pray she feels better soon.
Other then that no real news. We go in for the 48 hour EEG on Monday. Please pray that the Drs will get a clear picture of what kind of seizures Hannah is having and how to treat them. Please pray also that Hannah will tolerate being in the crib for 2 days. We will get out of the hospital on Christmas Eve. Her endoscopy will be January 5th.
On a lighter note Hannah and Joseph got to see Santa 3 times this week. I think Hannah really likes his red suite b/c she always gave him the most intense look. I've added a picture of them with Santa. Merry Christmas!

We got the results back from the blood work the GI did and everything is fine. No allergies, no problems with her liver or gallbladder. SO I guess we are going to schedule to endoscopy. When the nurse called to tell me the results, she said to give the diet changes two more days even though they were not helping and then call her back to decide the next step. I called yesterday and today and big surprise I can't get her to call me back. I know DRs see a lot of patients, but isn't there anyone that will actually call back!!!! ARGH!!!.
On another note the hospital scheduled her 48 hr EEG for Dec 22-24th. Yeah right before Christmas. So now I'm trying to get everything done before then. I hope though that they will get a clear picture of the kinds of seizures she's having and how often she's having them. Please pray that DRs will figure both the seizures and the reflux out. All I really want for Christmas is some answers and a plan to go from here.

This week as been pretty busy with Drs appointments. On Monday, Hannah saw her neurologist. I was hoping he would see progress in her but he didn't really even look, he mostly just talked about the seizures. He officially used to word epilepsy, which was a little disturbing, but he said that's what it is called when you have seizures on a regular basis. I guess its just a word.
On Wednesday I finally took Hannah to a GI dr. His million dollar question as well as everyone else is why it took so long. He is concerned Hannah may have a milk allergy and taking her completely off cow's milk. He was also concerned about her liver and gallbladder. So he sent us for a lot of blood work. Depending on how the change in diet goes as well as what the blood work shows he will then decide what to do next. Probably the next step will be an endoscopy and a ph probe. Please pray that the right decisions will be made and Hannah can start getting some relief. Several people feel like especially if the pediatrician missed an allergy I should switch, but I'm kinda at a loss about that. I mean this ped is a lot better then the ones I took Joseph to when he was a baby, but yet there have been a lot of things she has missed. Please pray for wisdom and discernment for us as to if we should stay with this ped or find another and if we find another that it will be very clear who to use. Thank you for praying for us we can truly feel them.

Heart Monitor Round Two!

I took Hannah to the ped today because she has a terrible cold and I thought she may have another ear infection. Everything with that was fine, but when we started talking about Hannah going to the GI DR next week, and how she had turned blue 2 weeks ago, her ped got a little worried about her. She was trying to decide whether to send her to the hospital today. When I said it happened 2 weeks ago what good would it do now and since its Thanksgiving and the hospital really wouldn't do anything this week anyway, the Dr decided to put her back on the heart monitor at least until we can get the reflux surgery. I know she's probably right and I do worry about Hannah turning blue at night, but I'm also frustrated because I know the thing is going to go off constantly for loose leads. The DR told me if she turns blue again from reflux to take her straight to the hospital. I guess its a little more serious now then it was when she was younger. Please pray that the GI guy will move quickly and do whatever necessary to bring relief. Pray that the tests that have to be done before the surgery can be scheduled quickly and that the surgery can be done as soon as possible. I just want Hannah to get some relief and I know it will never come if we don't get this reflux under control.

More wasted time and more frustration!

Hannah would not sleep during her EEG on Friday, so it was worthless. I have put in a call to have them do a twenty four hour EEG, but haven't heard back. I am not going to allow another regular EEG until they do the 24 hour one. At least that way she won't have to be sleep deprived. In the church nursery yesterday, the workers think she had a seizure like she did when she was really little. This is a little concerning b/c she hasn't been having them while she's been awake. We are also concerned that Hannah is starting to choke and turn blue again on her reflux. We are finally going to see a GI on Dec 3rd. Please pray for wisdom about the best way to treat her, even if that means doing the reflux surgery. Hannah's therapists are more and more convinced that her inability to sit up/hold her head up is do to it being uncomfortable and not just a strength issue. They think this because she purposefully pushes out of a sit rather then just falling over.
I called the genetics back and after a lot of run around, I was told that everything is fine and there is nothing abnormal with her genetics. Yet again we wasted time and energy. I just want one doctor somewhere to actually know what's wrong and how to make her better. I'm just so frustrated. Please pray for wisdom, guidance, and patience. Thank you for praying for Hannah and for us we need it.

Its been awhile, sorry. Last week I took Hannah to the endocrinologist. She was extremely rude and couldn't understand why in the world Hannah's Dr had even sent her. She said her hormone number was only 6 points elevated and that was nothing. When I brought up my concerns about Hannah's size and some other issues she was like "she's fine... nothing is wrong". She did say that if I didn't stop overfeeding her, she'd be seeing Hannah for other problems like a diabetes. I was furious because Hannah doesn't eat anywhere close to the amount of food a baby her age should eat. When I mentioned this to the DR she said then it was probably the meds. So in other words this was yet another wasted trip with no new information. I've about decided that all these Drs have no idea what's going on with Hannah and its worthless to try to get answers from them. I'm so frustrated we may never know what's really going on with her. Speaking of wasted trips, the last EEG for Hannah was inconclusive so she has to have another one on Friday. Please pray that she will be able to stay awake all night and then sleep during the test. One positive note at Hannah's grandparents had a regular baby walker from when Joseph was a baby. Anyway Hannah loves it and is moving all around the kitchen.

Halloween and Stuff

This week has been quiet as far as Drs appts, but busy for everything else. Hannah's therapist brought her a stander. It is supposed to help her put weight on her feet to increase bone density. She HATES it. I have mixed emotions about it, because I know it will help her, but more then anything else it makes her look like she has special needs. I know that she does of course have special needs, but this really makes her look like it. Please pray that she will learn to tolerate it better, and that it will do its job.

On Monday we took a quick trip to visit Hannah's great grandmother in Alabama for her birthday. At the rest stop, my mom asked Hannah if she had been good in the car with Papa and Hannah said..."goooooooooood". Or at least that's what it sounded like to us. Thursday, Jojo had a nursery rhyme parade at school. Hannah seemed to enjoy watching all the kids in their costumes, but always kept an eye out for her brother who was dressed like Humpty Dumpty. For Halloween, we went to our church's Trunks of Treats. Hannah was the prettiest Snow White there. I think she enjoyed, but was a little confused seeing everyone in their costumes.

Next week she has a neurology and an endocrinologist appt. Please pray that someone somewhere will come up with some answers of how to help her. They are still trying to get her seizures under control. We haven't heard anything clear from genetics, but we got a letter in the mail from them basically stating all her medical history which we already knew. I'm hoping that's not the letter we have been waiting a month for.

This week has been really busy. Monday, I took Joseph to the dentist and then turned around to take Hannah to the pediatrician. I took her in for a persistent cough, but she had an ear infection. Her Dr. is also going to try her on a new reflux drug. I know drugs help, but just wish someone could find the root of all these issues instead of just throwing meds at her. We took her for another EEG today, but we don't have the results back from that. The neurologist put her back on another seizure med since the zonagran is not working by itself. Yeah more meds!
I went to a support group for families with children with special needs. Two of the ladies there where great Christian women and I really enjoyed talking to them. They suggested a chiropractor that believes through helping open channels the body can heal itself. It certainly is an interesting idea. I'm going to look into it. Please pray that God will reveal answers to me, to Ben, and to the DRs to figure out what to do to help her.

Moving Along

Hannah had a pretty quiet week. YEAH! No Drs visits, just theropy. She did really well with theropy this week. We think Saturday night she said her first word... she said "JoJo", which for those of you who don't know, is the nickname we use for big brother Joseph. Speaking of Joseph, everything is fine with his heart. Thanks for praying for him.

Everyday we can tell that Hannah is getting stronger and we praise God for that. The new seizure med doesn't seem to be working so please pray that God will give the neurologists wisdom as to what will help her. I've added a picture of Hannah in her Creepster Crawler. Although its not her favorite thing in the world, it is definately helping her get stronger.

Today at the Atlanta Block Party

Today we went to the Atlanta Block Party - Hannah did awesome. There was plenty of great weather and fun for Hannah and Joseph. Hannah got to pet a rooster, baby pigs and a sheep. She seemed to enjoy getting out and enjoying life with her big brother and mommy and daddy.

We continue to pray that she continues to improve and absorb everything in her surroundings.

Our God is an awesome God!

Its Always Something

This week we had Hannah's genetics tested. They asked tons of questions, took measurements, and then took 7 viles of blood. They said if everything is normal we would get a letter in the mail in 3-4 weeks. If anything showed up they would call us. The Dr made the comment that anything that showed up would probably just be a name and not a solution, but we feel like there's a lot of value in a name. Especially when dealing with new Doctors, it would be so nice to have a name when they ask about the subdurals. We really feel like all of Hannah's issues are somehow related and we just want some answers.
She will see the endocrinologist in about a month. We are interested to see what they will say regarding her elevated hormone levels. Who knows maybe the answers will come then.
The neurologist took her off the Topamax because she never slept on it and it really increased her excessive tone. Now she's on Zonigran. So far she's sleeping better, but her seizures, spasms, jazz hands, jumps, whatever you want to call them have gotten worse. She just can't win!
As if we don't have enough on our plates, we found out that Hannah's 4 yr old brother Joseph has an irregular heartbeat and has to have an EKG done. Please pray that this is a minor problem, that he will outgrow with out intervention.
On a lighter note, Hannah's therapist brought her a creepster crawler. It looks like a low walker with a harness that goes under Hannah's belly to hold her up and help her learn to crawl. Its also really good for her head control. Most of this week she has just cried when we put her in it, but tonight she crawled from the living room to the front door with little fuss and very little help. Although this seems minor to a lot of you, for Hannah this was a major accomplishment. Please pray that she will continue to make improvements.

Weekend with daddy

This weekend marked a time with just Hannah, Joseph and Daddy. Jennifer was out of town at a reunion with her college sorority from Samford from Friday to Sunday afternoon.

Hannah did really well, and she seemed very attentive and focused when she was awake, she took good naps, and she slept through the night (mostly). She played a lot and it seemed that her appetite has picked up following the increase in some of her medicine - one that has been decreasing her appetite. She also has been taking that certain medicine much better the past couple of days which is a huge blessing.

Also, on Friday her therapist said she was making a marked improvement which reassures us that we are doing everything we can to help her get better.

Keep praying for her continued healing!

Hannah Blog First Posting

Dear Faithful Prayer Warriors, Friends and Family,



This is our first posting regarding our precious baby girl, Hannah Grace. She is truly a blessing to us, and we are thankful that God chose us to be her parents.



Many of you know what has been happening in her short life, but for those that don't we wanted to create a blog to help you stay updated on what is going on.



Hannah was born on September 4, 2007 in only 23 minutes (after we got to the hospital). We couldn't have been happier to see her when she arrived and her brother Joseph was with us right after she was born (he was waiting with the nurses). She was slightly jaundice, but she went home after only a couple of days.


The next week, Hannah turned blue and we went to the ER and she was diagnosed with severe reflux.


The following week, Hannah turned blue again and this time she was also put on Prevacid (she was already on Rantadine) and also on an apnea monitor. Meantime she also got thrush.


At the end of September, Hannah started having seizure like symptoms when she violently threw her head back and stiffen up.


On October 23, Hannah turned blue again while we were in South Carolina for a funeral - a first responder saw her while we there when she turned blue and saw her seizure like symptoms.



On October 24, we went back to the ER and had a CT scan as well as EKG and Echo Cardio Gram. We were told that her seizure like symptoms sounded like Sandifer's syndrome. But Sandifer's is voluntary - her symptoms were not voluntary but rather involuntary. No EEG was performed.

Shortly after, on October 26, Hannah was put on Reglan for her reflux. Immediately Hannah started sleeping on average of 22 - 23 hours per day - only getting up to eat or cry. She became very unresponsive to stimulus. The Reglan intensified her seizure like symptoms (they become much more violent) and she had 20 - 30 such episodes a day.

On or about November 9, Hannah had her 2 month checkup and vaccines. She was already behind on her development (well she slept all the time).

On December 18, Hannah went to the doctor due to being fussy and irritable. Her doctor noticed that she didn't track objects well or smile very often. She thought she might be blind. We were refered to a neurologist.

On December 20, Hannah went to see the neurologist and he was concerned about her optic nerve and referred us to an opthalmologist.

On December 24, Hannah was seen by a pediatric opthalmalogist, she was not very responsive, but her eyes were anatomically correct and she was not blind so this was a big praise to God that she was not blind. Since her eyes were not the problem, and MRI was being ordered by the neurologist.

On December 26, Hannah's doctor reduced the Reglan to once a day before bed - immediately she became more responsive, reached for a toy and cooed more.

On or about January 4, 2008, Hannah's doctor took her off the Reglan completely. She began to show marked improvement and the seizure like symptoms stopped.

On January 18, 2008, a day we will never forget, Hannah had her MRI. They did not have to use contrast and we thought everything was fine. Then the neurlogist called and said she had blood accumlating around her brain and we went back to the ER immediately. The worst part of this visit was the false accusations made by Dr. Gerald Silverboard the Neurologist of Child Abuse. We were being seen as criminals while they mistreated and neglected the welfare of our precious Hannah. All the staff were rude and some were even vocal about what we had not and never would think of doing. It took all of our strength and prayer to get home to then face DFCS as soon as we walked in the door from the hospital. The system is a joke. They want to make criminals out of every person out there while they cannot face the facts of who really abuses their kids and they send them back.

Fortunately, we did everything in our power and prayer to remain calm and went through the normal channel to clear our names and deal with all of DFCS' requests and home visits. All of this while our precious baby was suffering due to the lack of focus on the big picture - helping Hannah get better. We were finally through with this distraction by the end of February, praise be to God for keeping us close to each other as well as close to him.

Late February Hannah had another CT scan at which time is was determined that she needed to have a shunt put in to relieve the fluid/blood around her brain.

On March 7, Hannah had the first shunt put in by an awesome Neurosurgeon Dr William Boydston at Scottish Rite. He was a great doctor and had great bedside manners and never thought twice about us - he wanted to do his best to help Hannah and our family. He and his awesome assistant Christie even prayed with us before her surgery.

Much to our dismay and fear, Hannah got a MRSA infection in her shunt and it had to be removed. It was removed on March 20, and a picc line was put in to keep a line open for her to get meds through when she returned to have the second shunt put in. She became allergic to Rofampin and Vancamicin. Hannah successfully had her second shunt put in on April 4th.

Meanwhile, we switched to a different Neurology practice to get away from the former one.

In April, we started physical therapy with babies can't wait due to severe developmental delays.

In June, the new Neurologist diagnosed Hannah with quadriplegia Cerebal Palsy. Needless to say we were pretty devastated. But we know who we serve and our God will get us through, even if we don't understand.

In mid July, Hannah had another CT - everything was looking good.

Meanwhile, Hannah saw an ENT to check her airway due to her Trachea Malaysia (noise she makes from her voicebox). It was isolated to her voicebox, and the ENT said we should get her tested from a genetic specialist due to her long medical history.

Early August, began putting a patch over her strong eye in order to strengthen her weak eye.

Mid August, started occupational therapy with babies can't wait to work on her feeding issues.

September 4th - Hannah's first birthday! It is somewhat bittersweet, given her development, but we are holding strong to our faith that God will heal her and will have testimony through her and us when she progresses. We are thankful that we have such an awesome support staff through family and friends - friends that are as close as family - as well as a church that loves us as well as Hannah and Joseph. This past year has been particularly hard on him. He doesn't understand what all is happening and why we are so tied up with so many times away from him with Hannah.

September 10th - elevated horomone levels are being checked (awaiting results).

September 11th - Hannah's neurologist is pleased with the progress she is making. We are thankful that he is noticing her small yet important progress. We mention about her wierd movements when she is trying to go to sleep, and he orders an EEG.

September 17th, Hannah has an EEG at the Neurologist's office - she showed signs of abnormality for 13 + minutes during the EEG. She was initially diagnosed with infantile spasms - but currently that is under review because it does not fit the exact parameters detected during the EEG. It may be pre - IS - but it was good that it was caught. She was put on a bridge drug, and then Topamax. Since taking the Topamax, the movements have gone down dramatically, and she is becoming more active and vocal. Praise God for her improvements.

The above is from her birth until September 18 or so. We will keep everyone updated.

Please keep Hannah and our family in our prayers. We know we serve an awesome God that has a big purpose for why everything has been going on with Hannah. We pray that we will remain patient and strong through all of this and know that God is God. We thank you for your faithfulness in prayer; we know it is what has sustained us and Hannah's well being so far. Never sell short the power of prayer - constant ongoing, moment by moment prayer for someone that has a hope and future. Hannah was created for a reason, and we cannot wait to see what her life holds.

God Bless.