Shunt problems


Thursday, May 8, 2008 7:15 PM


Just wanted to update everyone and let you all know that Becca is pretty much back to normal. As normal as she can get 🙂 Some good news is that I am seeing a few small things here and there that show some real improvement overall. There seems to be some new confidence and desire to walk. Of course that has sadly been diminished by seizures causing her to fall each time she has tried. But she is trying more, and has more confidence to try that she never had before. We are still seeing more use of both hands. Her receptive language also seems to be improving.

Actually her overall awareness of her environment has drastically improved.

Its amazing.

She is still a little weak from all that has gone on, but that will improve. I can’t wait to see what is in store for her as she gets her strength back. We take her to the Neurologist later this month (for her seizures). David and I are wondering if we should seek a new Neurologist – actually one of the last times we saw her she actually said to us “If you want a 2nd opinion I’d be happy to help you find someone”. If we are going to go that route, please pray that we are able to find a doctor that can treat

Rebecca’s very difficult to control seizures.


Thursday, June 26, 2008 10:06 AM


I can’t believe my baby is 3, and in a few weeks will be starting pre-school.

Time sure flies.

We had a nice small birthday party for Rebecca.

What is really special is a couple of days ago I got together with Kathleen, and her daughter (Rebecca Grace). The two girls are only 5 weeks apart. We usually refer to them by first and middle names, since they are both named Rebecca. anyhow – while the two girls were sitting on the floor they just kept giving each other hugs. It had been a long time since we’d gotten together, and it was so sweet to see them being so affectionate with each other. I’d never seen my little Rebecca be so affectionate with another child. She really kept putting her arms around Rebecca Grace’s neck and pulling her in close. And of course Rebecca Grace is such a big helper, making sure Rebecca Kaylene has her sippy cup and paci nearby – and even bringing her toys. It isn’t quite the picture I had in my mind of how our little girls would play together as they got older. God had a different plan for my Rebecca – but the picture has turned out to be oh so Beautiful.


Tuesday, July 8, 2008 4:04 PM


well tomorrow we go to the Dr to get some blood work done, to check all of her medication levels. They have also ordered a CT scan, to make sure that the shunt is functioning properly. We still have our appt on the 17th with Dr. Leigh. But they have bumped up our appt with Dr. Grant (the Neurosurgeon who put in the shunt) from the 29th, to the 17th. So we will see both of them that day. Please, pray that her blood work shows us something!

Poor Rebecca has been having a hard time lately. She has been sleeping way too much (the better part of the day – she is only awake a handful of hours each day). On top of that its a struggle to get her to eat. Those of you who do know Rebecca know that she LOVES to eat – so this is not like her at all. This morning for breakfast I managed to get her to eat about half of a thing of oatmeal. And even that was a struggle. I’m still waiting on the Neurologist to call me back. Rebecca’s therapists are also troubled because we have noticed she is regressing in her skills. For instance – where as we were working on walking, we are now working on sitting. She can’t even maintain a sitting position without looking like a weeble wobble. Obviously something is seriously wrong. Her therapists have offered to send their notes from the therapy sessions to the Neurologist to help the Dr. get a better idea of what they see going on. Please pray for Rebecca that we can solve this. Its been heartbreaking enough seeing her struggle with head drops daily (that is the type of seizure she has). Its been hard enough with her having significant delays. But now she is facing serious lethargy, and appetite loss, and loosing skills on top of everything else. Its scaring David and I very badly.


Friday, July 11, 2008 6:58 PM


Oh how wonderfully fun our life has been since Wednesday afternoon –


So we get back from the blood work and CT scan. I’m just finishing up dinner, and Dr. Leigh (the neurologist) calls and said the CT scan looks bad and shows a shunt malfunction – we need to go directly to the ER and neurosurgery will come see here there. We know how painfully stressful the the ER is, so we balked at that idea without knowing that a neurosurgeon (hereby typed as NS) having viewed the scan, to confirm. (there was a previous time she said the scan looked bad, but NS said it was fine). So after NS called and said, yes it appears there is a shunt malfunction, you should come in, David and I rapidly gathered what we needed for a few days stay at the hospital.

So we get to the ER, and find out there are NO rooms upstairs in the children’s hospital. So we have to spend the night (and half of the next day), in the ER waiting. the next morning even when we see Dr. Fuchs – the NS on call that day (Dr. Grant was off), he said he didn’t have any OR time, so we were at the mercy of the OR to even get a slot to perform the surgery.It was around 3:30 or so on Thursday when someone finally came to get us for Rebecca to go up for surgery. Poor baby hadn’t had anything to eat or drink since 6:30 the night before. She had gotten an IV started earlier – so she wasn’t dehydrated, but she was CRANKY about no food or drink. So the surgery started around 4. At 5:30 we were told that Dr. Fuchs was finishing up and to go into the little room and he’d talk to us in a minute. (The little room isn’t an indicator of a problem – most doctors talk to the parents in their after surgery, since it is more private).

so here is where you jaw falls down

Dr. Fuchs said the source of the blockage was a blood clot in the shunt! (Feel free to curse, yell, scream, cry, whatever floats your boat – me I sat there with my jaw on the floor). There was big clot at the top – therefore the shunt couldn’t work – it was blocked. Then down a big portion of the top of the shunt tubing they found blood (clotted in a little snake like line all down the line). He tested the rest of the line, and it “tested” fine (as if no blockage), but he said since he found blood in higher parts of the line, he thought it would be better to replace the whole thing. So we hung out in recovery for a while, STILL waiting on a room. At 8:30pm a room was finally ready for us up in the 5300 of Duke. The great news is she was already awake, and alert. Groggy of course from the surgery, but sooo much better than the initial shunt placement. In the morning (Friday) she had some breakfast, and gobbled it up. She still didn’t eat much – but considering the past 24 hrs for it, it wasn’t unreasonable. But by lunchtime her normal appetite was back. We were finally discharged at 5:30, and came home. Time to collapse.


Monday, July 14, 2008 6:22 PM


Rebecca has been doing pretty good recovering. Take a look back to April, and you will see we did not have a good time at all with the initial shunt placement. This time is so different. (I blame it all on the anesthesia people because she wasn’t waking up right the first time – but this time with our hounding about her response to the anesthesia she was awake the night of the surgery).

Yesterday and today she has been playing, pulling up to standing and even waking with two handhold assistance (look at the main picture up to the left – that is what she was doing there). And even better is her appetite is back.

We’ve seen a few clusters of seizures each day, which is always sad and depressing, but we are oh so glad she is bouncing back fast. Lets pray that these seizures are still a part of her brain and body recovering from the surgery and that this time around the shunt really will help stop her seizures.

We go to the Neurologist on Thursday, just a regular appointment. Then Monday is our big follow up CT scan, and Becca gets the stitches out (Dr. Fuchs had to do sutures this time on the scalp incision – the belly incision still has the dissolvable kind)

Thank you so much for all your prayers and your support!


Monday, July 21, 2008 3:19 PM


The latest CT scan looks GREAT! Oh my goodness, I couldn’t believe the difference.

Rebecca got the stitches out today. She was such a good little girl. She is doing so good today, active and playing.


Thursday, August 28, 2008 7:00 PM


I meant to update earlier this week – but time slips away. So Rebecca has started Preschool. She will be going on Monday’s from 9:30 – 11 for a while, just to get her used to things. Mondays she has 4 classmates – all boys. And don’t you know they all fell in love with her. It was the cutest thing I’ve ever seen. I stayed with her, and will stay until she is all settled in. I’m doing this more for the staff than anything. Everyone is pretty anxious about her seizures. We are weaning her off the Depakote (one of her seizure medications). It wasn’t working for her – to control her seizures, and it was having bad side effects for her. We are still in the weaning stages and already there is marked improvement. She is more alert and more vocal since she started on this drug. We haven’t seen our little girl like this in a long time (this is a good improvement).


Thursday, September 25, 2008 7:10 PM


Rebecca continues to do well. We had a nice mini Vacation last week, at Carolina Beach. Rebecca actually liked the sand and ocean this time. She was so cute with the help of myself, or Daddy standing in the surf, letting the waves crash on her. I think she really liked the feeling of the water, and how the sand pulled away under her toes. Of course she tried to eat some of the sand when I showed the sand to her. YUCK! Becca and I have both had a nasty cold (I think quite a few people have had the one going around). It has been a tough one to kick. Another happy note is I think Rebecca is now totally done with bottles, and only takes a sippy cup (or one with a straw). This has been a really long process! She has also started getting really vocal again – perhaps some of the old Becca is reappearing, the one we had before her shunt surgeries. I have a request for folks – there is a little baby, whose caringbridge site I have been following. She is VERY sick, and is in need of our prayers. This is her site Please pray for Gracie.



A new diagnosis

Wednesday, October 31, 2007 7:50 PM


Wow – today’s appointment with Dr. Leigh took a long time. Not only did we not get back to see her until an hour and a half after our appointment time, but it took a long time once we got there.

Basically Dr. Leigh is concerned that Rebecca is now having what are known as Drop Seizures (Atonic Seizures for those who know the technical term). This means she is now having 2 seizure types. What this also means is instead of having Infantile Spasms, she is progressing into having Lennox-Gastaut Syndrome. This is more or less a progression of Infantile Spasms, marked by having multiple seizure types. We are going to wean her off of the Phenobarbital (at Mom’s insistence), and she will be started on a medication called Lamictal. Something we will need to do more research on, to consider after she is finished with her chemotherapy is called a VNS, or Vagal Nerve Stimulator.

This of course is something David and I need to do a lot more research on, but I know it is something that has helped a lot of people with drug resistant epilepsy, which is what Rebecca has. Infantile Spasms, and Lennox-Gastaut Syndrome (LGS) are both Drug Resistant Epilepsies. We took her to a few houses for trick or treating, but after such a long day she was really just ready to get in the bed. It doesn’t matter too much, we had so few kids come to our house that we have ample candy left over. Plus she got a few treats at the Children’s Health Center. There was even one nice Mother, Grandmother and cute little girl that had brought bags of goodies and let Rebecca pick out something. We got some Play-dough! That should be some fun sensory and Tactile stuff to play with – but we have to learn not to eat it. Rebecca also ate her very first lollypop! hopefully I will post the pictures tomorrow! At least She wore her costume to the clinic today!


Sunday, November 25, 2007 12:26 PM


Thanksgiving was good. Rebecca ate sooo much food. Thursday we went to Raleigh and spent the day with Grandma and PopPop and she ate some Turkey and all the trimmings, including a Becca sized slice of Pumpkin Pie. I can’t believe she ate so much. Everyone loved seeing her. Then Friday it was off to Thomasville and Kernersville to see Granny for Lunch, and then Grandpa and Kathy for dessert later. Again, for the 2nd day in a row Rebecca ate a lot of food. Friday she had some more Turkey, and fixings. For her deserts, she ate some Banana pudding. YUMMY. The Grandparents couldn’t get enough of her. Although everyone certainly got a taste of daily life with her. The little girl who doesn’t walk – but never sits still! All Daddy and Mommy kept hearing was “Wow, she sure is an active little girl”. Haha! Please pray that she can put all that energy to good use and start walking

on her own. On a good note – we should be getting her the helmet soon. We are expecting it to get ordered on Monday. I am very Thankful that this has finally come through for her.

One year ago we started the Chemo. Thank you everyone for all your prayers for the past year (and before, for the epilepsy). Your prayer has meant so much to me.


Monday, December 10, 2007 4:11 PM



We have our first helmet for Rebecca! today is day one with the helmet. so far so good. She even just took a little tumble backwards. Not a seizure, but just an uncoordinated fall backwards. But she conked her head hard – except for the fact she had her helmet on. So it didn’t even phase her. How wonderful. This past weekend poor baby was battling a touch of the stomach bug. Early Thursday am, I was awakened to her crying. I went in to see what was wrong, and discovered she had vomited. YUCK. Not the kind of surprise you want to find at 4am. I woke David up and we cleaned her up, and changed the sheets. She was fine all day, we went slow on the food and drinks. then again Saturday morning, she got sick. Several times Saturday. So we tried Saturday to get something into her, to keep her hydrated. Sunday we just spent the day giving her an ounce or two every half hour. Poor baby.

Tomorrow is another Chemo.

Wednesday we have a Speech Evaluation with the folks from Early Intervention. This will qualify her for Speech Therapy services.


Wednesday, December 12, 2007 10:10 AM


I added a picture of Becca in her helmet.

Basically we needed the helmet to protect her as she is playing and moving around in case she has one of her seizures. Even though the seizures she has are not what most people think of when they hear the word seizure, she still hits her head pretty hard as she falls. The helmet is a little big, which gives us room to grow into it, but we also still need to tweak it a bit so it fits her properly for the here and now.



Friday, December 28, 2007 1:47 PM


Rebecca had a very Merry Christmas.

It was the first holiday she has had that she was not overly sleepy or did not have so many seizures that cast a shadow on the day. She had so much fun exploring all of her toys as she opened them. Of course the wrapping paper is still as much of a toy as the item inside the box. It has not been until today that we are seeing the After Christmas crash, where she is more tired and having a few more seizures. But both David and I knew it was coming. We just feel blessed she could enjoy Christmas eve and Christmas day. After the first of the year Rebecca has another MRI, just a routine MRI, but it is something to pray we get good results for. We also have several clinic appointments in January. The Eye Dr, the neurologist, and of course her regular Chemotherapy appointments. Please pray these all go well.



Saturday, June 9, 2007 7:24 PM


We got a chance to talk to Dr. G about her more recent MRI lately. It showed the optic gliomas are still showing improvement. He measured on one side and it was originally 12mm and it is now 7mm. The enhancement is now almost gone.

We are still struggling with her seizures. We recently added Klonopin. We also increased the dose of her Phenobarbital. Hopefully this will get things under more control so she can have more developmental improvements. Still no independent walking. It almost seems as if she is scared. Anytime you try to get her to stand by herself, the moment you let go she either reaches for the nearest object (ie couch) or sits down. The good news is she doesn’t fall down anymore, she has a controlled sit and protective extension reach with her arms.

We are also seeing a lot of improvement with her interaction with toys. She is much more interested in her environment, exploring toys and playing with things. I can’t believe my baby is almost two. Just a week and a day until her birthday. Prayer requests would be that she is able to enjoy her birthday this year. She had so many seizures during her first birthday it really put a damper on the day’s festivities.

Thank you friends and family for your support!


Saturday, August 11, 2007 10:27 AM


Things are still going well. Not much in the way of changes or progress. She is babbling quite a bit and you can hear more and more words starting to emerge.

She had her MRI the other week. We should know some results either this Tuesday or next Tuesday, since we have visits over at Duke those days. Rebecca did have her 2 year “Well Baby” pediatrician visit this week.

Things look good. Rebecca is in the 12% for height and 20% for weight. So we will continue to give her pediasure when she isn’t eating enough. We will go back to the ophthalmologist in September. The doctor will reevaluate Rebecca’s Stabismus and Amblyopia. We haven’t been able to continue patching – Rebecca just pulls the patch right off. Please continue to pray for her seizures to end. As she is getting more mobile, and spending lots of time standing, and cruising, her head drops are becoming a little problematic. Our poor baby keeps hitting her head on things. Or the head drop throws her off balance and she falls down.



Tuesday, August 21, 2007 7:14 PM


So today was another one of our long days at Duke. Normally in the day hospital we are just in one of the chairs, and David and I have to take turns being back there with Rebecca (only one adult allowed back there with a child, unless you are in a room). Well after a while the nurse said they had a room open, and if we wanted to use it, we could. This is a RARE event, so I took it. After a while David gets back. I was talking to the woman who used to coordinate the study for seizure medications Rebecca was in (before she started on Chemo). I called her and told her to stop by and say hi, and see Rebecca. I seriously thought David had Rebecca. But she was quicker than he was. Well, all too fast, our poor baby fell off the bed. She landed on the base of the IV pole (can we say, mega major OUCH). Of course several nurses came in, and her nurse practitioner came in and did a thorough check to make sure nothing was broken. Our poor baby!

She screamed for a good while, and then calmed down and fell asleep.. She isn’t even any worse for the wear after we got home. She is still just as rambunctious and wild as usual. She has a few bumps, but nothing more than the average two year old has.

And she has been proving herself quite normal in that area lately!

BTW – the MRI shows things as stable. I guess that is better than things growing, but not as good as shrinking. All of my prayer warriors, please pray the tumors start shrinking again.


Friday, September 7, 2007 6:14 PM


Rebecca has been doing well the past couple of weeks. The day after her big fall, she was totally fine.

I find myself laughing a bit that she is so significantly developmentally delayed, yet somehow she still hit the terrible 2s right on target! How does one manage that?

I think we are getting even closer to her walking by herself. On labor day I took her to see Pop Pop and Grandma Jacky. She loved holding onto someones hand (mostly just a finger) and walking all over their house. It was so cute. She even walked down the front sidewalk, just holding onto my hand. This week David and I have seen her let go of things more and more, and just stand there for a few moments, and taking a few more independent steps. so far the most she has ever taken have been 3 full steps by herself. I just know she is waiting until no one is looking. That is just how she has hit all of her other major milestones. I guess she has to practice first.

If my friends and family could please pray for my patience with her. I’ve found that the more she exhibits the 2 year old terrors, the more frustrated I am getting. Also, I think I am just run down buy all of this seizures, physical & occupational therapies, and medical stuff. I know other parents of kids with special needs (medical and/or developmental) know exactly how I feel. Some days are just hard.

Keep on praying for Rebecca. We want those seizures to stop! It is very hard for little girls to learn to walk when they might have a head drop/seizure and fall down and bump their head. owwie.


Thursday, October 4, 2007 9:53 AM


Rebecca is doing well. I know I don’t update much, but most days are pretty much the same as the last for us.

Right now we are trying really hard to get her a helmet for her seizures.

The hold up is of course in the red tape. We are blessed that since she is young and still has services from Early Intervention that there is funding from Early Intervention to pick up where Insurance leaves off. This is good, because Insurance denied her the helmet because they said something about it being “Environmental” (I wasn’t on the call, it was between the vendor and the insurance company). I’d like to know what the insurance company expects us to do? Pad the walls and floor with foam? would they pay for that since they won’t pay for the helmet? (note the very thick sarcasm).

Similarly we are still trying to get her a bath chair, a special seat to fit in the bath tub for kids with special needs. Kind of like a lawn chair. There are all kinds of attachments you could buy for kids with more physical involvement, but mainly we need one with the seat belt so when Becca has a seizure in the bathtub she won’t instantly go under the water. The first vendor we were trying to use wasn’t working out, so we switched.

Fall is here! YEAH! I am so glad.



Friday, October 12, 2007 12:14 PM


Fall is here!

Of course this means it is also the time of year Rebecca is getting lots of little colds. It seems like she just got past the last little bit of the stuffy sniffles and the next one has started. And because she is so young, all we can really do is use lots of saline and keep using the “mean” bulb nose suction thing (or as I call it “snot sucker”). Thankfully she hasn’t gotten any fever with this. I am trying to make sure she is getting lots of extra naps and rest so we can keep this little bug at bay.

Chemo again on Tuesday (the 16th). As she gets older it is getting more difficult – just trying to keep a wiggly toddler entertained for so long. It isn’t like we can just let her get down on the floor and play. And even if we tried to set her up a nice comfy spot on the chair she would try and climb out.


Tuesday, October 16, 2007 6:16 PM

I just had to post how big she is getting

Our little girl is

34 1/2 ” long and 25.6 lbs

And we just got her new shoes – she is in a size 7.5 (toddler shoes).

She is a long skinny kid.

It seems like the last time she got Chemo she had just jumped to 33 inches, and this month she shot up another inch! She really is a growing girl!

She is dong okay tonight after Chemo. Really sleepy, but okay. poor kid didn’t take a nap today. I guess she couldn’t get comfy to take a nap while she was in clinic. Poor baby. We got home and put her in the crib and she went right to sleep.


Starting Chemo

Friday, November 10, 2006 7:30 AM


Rebecca will have a new Video EEG (VEEG) done at Duke next week. We check in on Tuesday. The VEEG will entail having the electrodes attached to her head to monitor the brain activity – particularly the seizure activity.

There will be a button that David or I can push each time we see Rebecca having a seizure. This will make a notation in the recorded file so doctors can go back and compare the brain activity and know more about where in her brain her seizures originate from. The only downside for Rebecca to this will be that she will be somewhat limited in what she can do. There is a pretty long lead on the equipment lines, but she won’t be able to be as active as she is at home. She is quite good at rolling all over the floor at home.

Later this month we will meet with a Neurosurgeon to discuss the fact that the right hemisphere of her brain continues to grow larger than the left and is starting to cause too much pressure in her skull. Right now I don’t know much more than that. We also know that she has bi-lateral optic gliomas, which are directly related to Neurofibromatosis. It appears these have also grown. Although these are benign, we will be meeting with a Nero-oncologist to discuss options. Surgery is usually not an option for these types of tumors because it is nearly impossible to operate without doing more harm than good. I will try to keep everyone updated





Tuesday, November 21, 2006 2:07 PM


Well the hospital visit was much more long and drawn out than we planned. Rebecca had the Video EEG monitoring. She also had a PET scan and another MRI. We met with Dr. Gururangan (aka Dr. G) because of the bi-lateral optic gliomas found on the previous MRI. The new MRI done was to focus on this region. Since surgery is not an option with this type of tumor she will need to have chemotherapy to stop the growth (and hopefully shrink) the gliomas. Rebecca will have a portacath put in so the

chemo will be easy to administer. All of the chemotherapy treatments are scheduled to be outpatient.

However, before she can begin chemo the Neurologists and Neurosurgeon need to decide if there is anything that can be surgically done to help Rebecca’s seizures. So right now we are still in a hurry up and wait pattern. We meet with Dr. G again next week, any maybe by that time the Neruo team will have reviewed her EEG, MRI and PET scan and made a decision.


Tuesday, November 28, 2006 5:21 PM


We met with Rebecca’s new Dr today. Rebecca will start Chemotherapy next Thursday (December 7th).

They were actually able to get her in really quick for the surgery to implant the Infuser Port – that is going to be this Friday (December 1st). It will be a same day surgery if all goes well. Then Thursday, and every fourth Thursday thereafter for the next year, Rebecca will go to Duke for outpatient Chemotherapy. Chemotherapy is the single best way to treat this tumor type. Although it is benign, the pathology doesn’t matter. It is still a bunch of cells growing

and behaving in ways they shouldn’t. Her hair shouldn’t fall out, but she will be nauseous. She will get Nausea medication each time before her chemo starts. We will also have to get blood cultures done weekly. The nurse from Dr. G’s office is trying to work it out for us to go to the clinic over on Herndon

Rd for those, so we don’t have to come to Duke each week. The port, will be completely under her skin. Doctors will be able to administer medications through it, and use it for blood draws. It will save

her in the end from starting a new IV each week, and multiple sticks each time. Here is a great site with info on the Port – click on Subcutaneous Ports on the Right. Its a really neat Audio/Visual to describe it all.


Friday, December 1, 2006 7:11 PM


Surgery went well today. We were home by noon. Rebecca is very sore and very tired. She really doesn’t like anyone touching her – even holding her. I guess the first few days post-op we just move through the days as best we can. Each day Rebecca will feel better.


Sunday, December 3, 2006 5:06 PM


Here it is Sunday and Rebecca is already doing a lot better. She is back to playing almost normal – not quite 100%, but probably 80% or so. Just wanted to post a quick note to let everyone know she was doing so well.



Friday, December 8, 2006 7:38 AM


Rebecca had her first treatment yesterday for the optic gliomas. Ya know – the Dr’s and Nurses at Duke are great – but the system is horribly ineffective! First off, the woman at check in forgot to put Rebecca’s paperwork back there for the nurses, so the nurses never knew we where there. We waited over an hour before we were taken back. The woman claimed it was because things got so busy when we got there (I didn’t see all those people). So for a 9am appt, and what should have been 3 hours of treatment, we were leaving at 3:30.


Rebecca did pretty good while we were there. Mostly slept. Santa was in the Children’s Health Center and although Rebecca didn’t get to see him, one of his helpers brought Rebecca a present – a nice cute stuffed animal. Santa bought toys for all the boys and girls in the Health Center that day. Rebecca got sick around 9 last night, so David and I had to clean her up, and change her sheets. While changing her sheets, she got sick again. Then she didn’t want to go back to sleep. So she played in her crib for at least an hour. I got smart though and took out all the soft toys – just in case they were in the line of fire.

Already this morning she is playing and doing well. But then again, she just finished her bottle. We shall see how long it lasts in her tummy. I don’t know how these treatments are going to go in the long run – as far as keeping her occupied. Rebecca really wants to be climbing around and because the treatment area is really just a row of chairs anyplace for her to play. There are a few game systems and TV’s with VCRs for older kids

though. We shall see!