Through the perspective glass

I don’t talk as much about the genetic disorder that Rebecca and I have. Mainly because it has often taken a back burner to things. Rebecca and I both have Neurofibromatosis. http://www.ctf.org/Learn-About-NF/Diagnosis-of-NF1.html

I recived my diagnosis approximately 26 years ago. My parents had long been curious about the “freckling” that I have on my skin. Becca and I both have multiple large freckles all over our body. Some the size of a pea, some larger than the size of a half-dollar (albeit they are oddly shaped). As it happened, there was a free skin cancer screening at Crabtree Mall. My mom took me, thinking that maybe this guy would know what they were. I know a few of my spots have been present since I was a baby, but I also know more developed as I grew older. The same trend is present with Rebecca. Anyhow, the dermatologist running the screening took one look at my spots and said they were not skin cancer, but was pretty sure he knew what they were. He mentioned Neurofibromatosis and suggested we get a referral to a Neurologist. And so, my journey began.
I do not recall my first appointment at Duke. There are certain things about those early days going to Duke that I do remember and it strikes fear in me. Back then it was not a matter of going into a bright, colorful Children’s Clinic. No! The Neurology Clinic was in one of the basements of Duke South. Dark wood paneling lined the walls. Poor lighting the hallway and waiting area. I remember taking the “shuttle” thing from one hospital to the other. But for years and years all I remembered was the elevator that moved sideways. Between that and the number of elevators that Duke has that have doors that open on either side has led to my great distrust of Elevators!
I remember the Neurologist telling my parents “Well she will never be a ballerina”. Little did he know that I wanted so incredibly badly for my parents to let me take dance lessons. It broke my heart! I vaguely remember some other poor little girl finishing her MRI scan and being wheeled away crying and being so upset. It did not bode well for me!
My parents got some pretty upsetting news from that first MRI. I had 4 tumors.
I remember the entire family being so incredibly upset, fearing I was going to die. None of the tumors were operable. There was no chemotherapy option.
For the time being it was wait and see.
I distinctly remember swearing that God would not let those tumors grow until He allowed Doctors to have a way to remove them. I also swore that one day there would be lasers that could get go them. (this was before CDs folks – so how my little 10-year-old self knew ANYTHING about lasers is pretty miraculous).
My parents had a long agonizing wait for the next scan, and then the next one and subsequent ones to show that the tumors did not grow. 26 years later and there has not been any growth.

Flashback to this past Tuesday. Becca had her annual MRI. I did not plan on a meeting with either her Neurosurgeon or Neuro-Oncologist afterwards. After all, her gliomas have been stable so long, I didn’t see a need for an appointment. They could call with results. Even the Nurse for the Neuro-Oncologist agreed it was a fine decision.
Famous last words!
Thursday the Neurosurgeon called. She has a NEW spot. Not seen on previous MRI scans. It is 5mm. Yeah – I had to google that too. It is slightly larger that the diameter of a #2 pencil. That gives you pretty good perspective. According to the doctor that is “tiny”. Our next step is waiting 3 months for another MRI.
So now I sit here, with a chance to look through the perspective glass. I know how my parents felt. Somehow I don’t have that same feeling I did when I was 10. I can not summon the “it WILL be okay”. When I was 10, I didn’t need anyone to tell me it would be okay. I just KNEW. Now, I don’t know. I can’t say if being a parent has changed me that much or if my Faith is faltering. I know she will be okay, don’t get me wrong on that one. I know God has His mighty hands around her. But I do not feel as assured about timing, or the overall sense of things like I did when I was a kid.
I ask you to pray with me. Pray for Becca’s healing. Pray for David and I as we muddle through this as parents. Pray for the doctors – that the right decisions will be made in the months to come.

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Moving forward against this monster called Epilepsy

So Becca has continued to have problems. So much so that when she went for her MRI last week the Neurologist who came down to turn of her VNS quickly agreed with me that something was wrong. Rebecca was – well just not Rebecca. This is a child that normally during the time before her MRI scan she is practically climbing the walls, and I’m doing all I can to hold her down (or leaving her in her wheelchair for my own sanity!). This time, she would lay on the stretcher, not 100% still, but no one had to keep a hand on her at all times.
The Neuro person (although I think it was a RN or PA), asked what types of seizures she typically had, and when we last gave diastat. Thankfully I had all that on my Android Tablet. I showed her a video. I showed her the spreadsheet with the seizure data. She showed the video to the Pediatrician who checks kids out before their scans. Both agreed it may not be safe to give Rebecca a scan as she was. So they made some calls, and did some magic. Becca was sent upstairs to get an EEG first to make sure she wasn’t in status. This was a huge relief to me. This was what I wanted done if her MRI was clear. So she was just getting the EEG first.
That took a while, they monitored her a bit longer than they would for a regular routine EEG. She wasn’t in status. Her regular EEG pattern is quite abnormal, and that is just what it was. It showed a few seizures (which I knew, I was laying with her on the hospital bed the whole time and saw them). The good news is, the EEG captured the two big event types she has now.
So after her EEG we went back downstairs for her MRI, since we now had the all clear to proceed with that.
Once Becca was back on the scanner I was able to go grab some lunch Becca can’t eat before a scan since she is sedated, which means Mommy can’t eat in front of her (I’m not that mean). Once her scans were done I went upstairs to try to catch her Neuro-Oncologist. The fabulous Dr. G. We had long since passed her appointment time because of the EEG. But I was advised to go upstairs since he would be able to pull the scan results already and may be able to still meet with me.
the receptionist called back to him and he said he would call me with results. He did – by the time I got back downstairs. Alas, I had cell phone troubles and had to use the phone in radiology to get back in touch with him. But it was so nice to have the results of her scan before she was even back in recovery! I kid you not – I had not even seen her after her MRI and I knew her MRI was stable!

She took forever to wake up from sedation because of stupid seizures. She would wake up, have seizure and go back to sleep. Yet thankfully we were allowed to go home. That evening we ended up giving diastat. She came around.
Saturday was another tough day, requiring Diastat AGAIN. Same thing on Monday, which also had me hold her out of school. I got in touch with her Neuro Monday. Yes, ironically enough, through everything last week I had not spoken with Dr. Mikati yet. Well, okay I didn’t talk to him Monday, just his nurse, Renee. But we talked about what meds Rebecca is on and what meds she has tried before.
The final decision was to try a new medication. Rebecca has started on Trileptal. Well – okay the generic, which is some crazy name I can’t spell or pronounce. I’ll have to stick with Trileptal for now, which I can spell. She is getting 300mg 2x a day.
Hoping this helps. Epilepsy really sucks. We already know we are in this for the long haul. We may one day find some drug combination that gives her a better level of control. I have faith that one day God will fully heal her. I do not know when those days will come. I hope she continues to enjoy life as much as she does. She is a blessing. I just can’t get enough hugs and kisses out of her – no matter how much I hug and kiss her. Its a good thing she is a snuggle bug! I told her last night I had to get in as many hugs as I could while she was still small, and that she was nowhere near as small as she used to be. And for those who have never been lucky enough to get a Becca hug or a Becca kiss, you are missing out. She gives good hugs. Okay – her kisses are wet and slobbery, but she knows what it means when you ask for a kiss.

School is going well for her. The first quarter is nearly over already. Hard to believe. Becca has a new classmate – and trouble because it is another cute boy, and another first grader. Jameson better step up his game – he has competition now! Hahaha! Although considering there are 4 boys in that room and only 2 girls, I don’t think the girls have much to worry about.

Well I can’t think of much else to write, so that is all for now.
thanks for reading and have a blessed day.

Surgical workup

Saturday, August 1, 2009 9:36 AM

 

Well Tuesday is going to be our big day!

The past month has gracefully flown by. We did manage to switch Rebecca’s Keppra back to regular Keppra from the Keppra XR and that has helped, but she is still in somewhat of a rough patch in regard to her seizures. But don’t fret – that is a GOOD thing, going into this surgery. The first part of the surgery is to implant EEG electrodes, and monitor her seizure activity. So we WANT the seizures to continue, hard and heavy once we get into the hospital, so the doctors can get lots of data to make the right decision. Becca started her new year at Pre-K. Same classroom and same teachers, but this year the 4 year old’s go 5 days a week, all day. So Becca is going to school as much as a Kindergartener! It wears her out, but she enjoyed it. They even take nap during the day. she has had a few bouts of digestive issues (I’ll spare you the details), and has missed a few precious days of her only 2 weeks of Pre-K before the surgery, and missed several sessions of OT or PT, but keeping her healthy before surgery is important. I’ve been helping her walk into school this year, so instead of riding in her wheelchair to and from the classroom, she is walking in! Just like one of the big kids. Well – not quite, she requires a lot of hand hold assistance to keep a distracted 4 year old from sitting down to play where she is, or walking up to any and every stranger in the hallway to say “Hello” in her own special ways. I am so proud of her. Even other teachers at the school, who just know Rebecca from seeing her in the hallway are amazed at how well she is doing and have commented on her progress to me. Rebecca even has a special teacher friend at school, that isn’t even her teacher! Ms. Eubanks teaches 4th grade, but Rebecca loves to stop and say hello to her each morning. The first day of school she toddled right up to her and gave her a big hug. I don’t know who was more ready to cry, the teacher or myself. The attached picture is from her first day of pre-k this year. Continue to pray for us as we have her Pre-op on Monday, and surgery Tuesday. I’ll do my very best to keep this site updated after her surgery is over (Duke has internet access so it shouldn’t be a problem).

 

 

Monday, August 3, 2009 1:29 PM

 

Today was pre-op we did learn one thing today, that was different than what we thought. It isn’t going to be all one admission like we were under the impression it was supposed to be. Evidently this will just be the 1st surgery (the intracranial EEG leads). Then after they get all that data that they are happy with, they will remove those, keep us another night or so, and send us home. Once she is back at her baseline, we will return, and THEN proceed from there. Dr. Grants aid the risks are too great to just proceed with grid placement right away. She needs some time to heal. So whereas it doesn’t mean as much consecutive time in the hospital as I thought, it will mean more back and forth than we thought. oh well. We’ll know for sure after 4 today what time the surgery is, but Dr. Grant thinks it will be about 9 or 10 am tomorrow. It should last about 4 hours. Still expect 1 night in PICU, then off to one of the EEG monitoring rooms in the 5100, likely 5102 again.

 

Tuesday, August 4, 2009 3:07 PM

 

Rebecca is out of Surgery and we are waiting to see her in the PICU Dr. Grant says everything went well. I’ll update more tomorrow once I’ve seen her etc.

 

 

 

Tuesday, August 4, 2009 7:20 PM

 

We’ve been into the PICU to see Rebecca, she is still really groggy and sleepy, so we’re just trying to let her sleep for now. They gave her some additional pain medication, since she seemed to be pretty uncomfortable (you would be too with holes in your head!). But the more she rests now the faster she can heal. But so far she seems fairly responsive to David and I. Tomorrow we’ll get moved to one of the EEG monitored rooms in the 5100 unit.

 

Wednesday, August 5, 2009 4:33 PM

 

We are settled into the room now (5103). I went home and took what was perhaps the best nap of my life! David stayed with Becca. Rebecca is still getting pain medication pretty much every few hours to control her pain. We still haven’t coaxed her into eating or drinking. We’ve given her drops of apple juice through a straw – but she has yet to suck or drink on her own. We’ve tried giving her bites of yogurt on a spoon, but she isn’t very interested. poor baby!

Now we just settle in, and “push the button” every time we see a seizure event.

 

Thursday, August 6, 2009 7:43 AM

 

Rebecca and I both had a fairly restful night.

After my last update thanks to my faithful prayer warriors we were able to coax her into eating more pudding. yippie! I’ve given her a few bites this morning, but it was about the time she needed more pain medication, and she was just getting to sore to use the energy to eat (I imagine using your mouth and jaw to open for food is hard when your head hurts as bad as hers does). So we’ve given her some more medication and will give that some time before giving her some Applesauce (a favorite food!) They are gonna take out the catheter today. I know – a catheter for a kid in diapers? But it is so they can easily measure fluids in and fluids out during that period right after surgery. They will also take out the 2nd IV line in her left hand. It hasn’t been used since the surgery, but was there just in case. They kept saying they wanted it in case her other IV fails. I finally convinced the Dr they can use the Dang port if her IV fails, it was stupid that it wasn’t used in the first place. All she keeps doing is chewing on the IV access. (I think its a bit of “Hrm what is this – get it off my hand!”)

I feel badly because she so badly wants someone to pick her up, but she hurts to badly for us to even get our hands under her. She has signed eat a couple times to get a few bites of food. And yesterday – maybe she was playing, I dunno – but she signed “More”, we couldn’t figure out more what, but she kept signing more. She has NEVER signed more before. I know this isn’t even THE epilepsy surgery, but still, a major communication breakthrough. Dr. Grant said they will likely have their conference on Friday to discuss all the data. Keep up those prayers.

 

Thursday, August 6, 2009 8:01 PM

 

We’ve spent most of the day trying to coax her to eat and drink. She still hasn’t been very eager about either. I reckon part of her refusal to drink is she is so well hydrated with IV fluids. But we’ve gotten her to eat a little bit more at each meal. Dinner tonight was Chicken Tenders, so those cut up into teeny pieces were gobbled up because she could do it herself when I gave her the bite. But it wears her out fast. She did get to snuggle and sleep on daddy’s lap for about 10-15 minutes today. Moving her isn’t easy, aside from managing her pain there are also the wires to worry about. Those EEG electrodes from inside her head are attached to a small backpack with little jumper boxes. During a normal EEG she only has 1 jumper box thingy in the backpack. But because of the number of electrodes there are 3 of them. Not something she could lift herself. Plus the lead from the wires from her head to the backpack isn’t all that long (the backpack is sitting beside her head on the bed). So to manage that, all the other typical hospital stuff, it takes 2 people to move her. The good news – and those that know her well can appreciate this. She is still excited about gummy bears. Put a bite of food in front of her and you can see the “ehh” reaction though eyes that are only halfway open. Put a gummy bear in front of her and those eyes open nice and wide and she looks at the gummy with that look of “ohhh!” Then her little hand reaches out and grabs it and she shoves it into her mouth. Gobble Gobble! Our baby LOVES her some gummy bears (The Target brand gummies are especially soft, and flavorful. Total opposite of the traditional “Haribo” brand! Whoda thunk the tarjay brand would be head over heals better, but it is.

The doctors are going to have their big Epilepsy conference tomorrow. This is where they will look at all the data they’ve gotten, her scans etc and try to come up with a next step. We don’t know the time, only “morning”. It isn’t something we get to attend unfortunately, but it does mean that by mid-afternoon we should know something.

 

Friday, August 7, 2009 9:39 AM

 

Like clockwork – day 3 and the swelling commenced, and this isn’t even as major as the other surgery Well, the doctors met and talked, and it seems that the activity does mostly come from the right temporal lobe, but enough activity is seen everywhere else to say surgery is not a option. So the next step would be a VNS (Vagal Nerve Stimulator). So they will monitor her through the weekend, She is on the surgery schedule for Monday to remove the leads. Monday they will take them out and we should go home Tuesday. Then we’ll give her a month or two to recover and decide on the VNS. She ate a little bit better breakfast this morning and even drank a little bit of her chocolate milk!

 

Sunday, August 9, 2009 7:43 AM

 

So just saw one of the Neurosurgeon’s and found out we are on schedule for first thing in the morning (don’t know what that means, but really early I suppose). He said they bumped her to the first case. All the better for her though!

So we’ll go home Tuesday! The end is in sight. Although I know we really NEED Becca to eat and drink better. So please – all my prayer warriors, pray she gets her appetite back. Becca is NOT a picky eater, or a child who would normally ever turn away food or drink. We are dangling some of her very favorite foods in her face and other than gummy bears she is pushing away most everything. She just doesn’t want to open her mouth.

 

Monday, August 10, 2009 3:04 PM

 

So all the electrodes are out. The surgeon put a very thin layer of titanium mesh along the area of the front where those holes are. He said the other holes he could cover with muscle, but the ones in the front he put the mesh to give her a little bit more protection as the bone grew back in. She obviously still grumpy and we are managing her pain. But she has already drank some chocolate milk with the gusto we are used to seeing her drink with! She snuggled and slept on David for a good bit as well.

Hopefully we’ll head home tomorrow!

 

Tuesday, August 11, 2009 11:16 AM

 

well she ate pretty good for Breakfast, unfortunately she has had a minor “setback” through the night. She has had a slight fever on and off. Because she is post-surgery we have to stay another day to make sure it doesn’t get worse and that there are no signs of infection. Major bummer. We really wanted to go home. (that and the kid in the room next to us is being a royal pain and keeps having major temper

tantrums and screaming) Pray her fever goes away!

*minor update* – since the room we were in is one of 2 rooms wired for Video EEG, they needed to move us to another room so they could use it for a patient coming in who needed the Video EEG monitoring (VEEG). We were on the VEEG monitor until they took her strips out yesterday. guess the good news is, we aren’t next to temper tantrum girl anymore! (she had 3 or 4 screaming fits last night between 8 and when I finally passed out, not because she was in pain, but because she wasn’t getting her way)

 

 

Wednesday, August 12, 2009 10:56 AM

 

Home at last, home at last, Thank God Almighty we’re Home at last (My Apologies to the Rev. Martin Luther King for rewording his famous line – but its just perfect for how we ALL feel) Rebecca was so ready last night she managed to remove her port access – aka “De-access herself”. Thankfully the IV had been stopped and she’d already been Heparin flushed, but its still too funny. She was pretty much pitching a fit anytime she was in the crib too – she wanted OUT!

She is sleeping comfy cozy with Daddy on the couch now.

Now for a few days to just chill out and relax.

 

Wednesday, August 12, 2009 7:43 PM

 

I’ve realized over the past week a few things I never realized how much I took them for granted

– Wood sub-floors (walking around on concrete floors all day hurts your feet, Hospital floors have zero give to them. Your typical house flooring has the sub flooring to give it that give (and usually that squeak!). – Being able to just walk into the kitchen to get what I want, when i want it. No trying to make sure Becca is securely in her bed and trodding down the hall to the ice machine/water fountain to get something to drink (or make my Crystal Light with).

– Not having to hear other children have temper tantrums at all hours of

the day and night.

– SILENCE, no monitors beeping, the constant clanging of the little metal

rack where charts are kept, or the opening and closing of 3 ring binders.

– 2 ply toilet paper (that industrial hospital toilet paper is cheap!)

– Being able to give my child her medications on OUR schedule not the

nurses/hospital.

Ahh – so glad to be home!

 

Sunday, August 16, 2009 10:46 AM

 

Becca is recovering well. Her appetite is more or less back to normal. I guess like all kids her age, she has ups and downs in her appetite, and she is at the low end of her normal. Soon she’ll be back to eating everything in sight. She is perking up as soon as David or I walk into the room with food, which cracks us up. She is like a little puppy dog the way she comes and begs for bites of foods, its so cute! (and she does a great baby bird impression, opening her mouth and pecking her head forward). It never ceases to amaze me though, how clingy our little girl gets after hospital stays. Now granted, she is a snuggler by nature, but she turns into what I lovingly call “Velcro girl” – because she clings to us like Velcro. You try to pry her off, but her little arms just wrap around you so tightly. She practically climbs back up you.

We’re still working on getting her to not rub and scratch at her head, but we are unable to keep any kind of wrap or bandage on there to keep little hands off her head. She has pulled off everything I put on there. We go on the 24th to get her stitches taken out. I plan to take Becca to her PT appointment on Tuesday – it was one I didn’t cancel and I decided we’d go and just give it as much as Becca was up to. She needs the work out anyhow – and I know she will LOVE LOVE LOVE the chance to ride the tricycle. I hope to get David to upload the pictures he took with his phone while we were in the hospital – he took a couple of Becca in some really cute positions (she was asleep but in a strange position).

Thank you all for your continued prayers and support! And thank you to all of our wonderful nurses in the 5100

I can’t even remember all the nurses we had over the week – but you were all so wonderful to us! Thank you. (ohh and the nurses in the PICU that one night too!)

 

Tuesday, August 18, 2009 7:21 PM

 

Becca continues to do awesome recovering. She had her first PT session after the surgery today – she did great. Yeah, not the same endurance or strength, but awesome! She is going to get to start seeing Lisa again – the PT she saw when she was really little up until early this year. Lisa is now seeing patients at Lennox Baker (she was doing Home Health and kids who were inpatient at Duke). So happy that Becca and Lisa get to work together again! We love our other therapists, but Lisa has a long history with Becca, so its extra special. We go Sept 9th to get the Vagal Nerve Stimulator (VNS) put in. Here is a link to the website for the VNS

http://www.vnstherapy.com/epilepsy/patient/index.asp

That can explain it better than I could.

I do have a prayer request – not for us, but for another child that is very near and dear to our hearts. We met Mackenzie (aka Z) when Rebecca was getting Chemo. She is the most amazing child I have ever met – or will ever meet. Wise beyond her years (heck, wise beyond MY years!) She has been battling cancer for a long time, and well – things are pretty grim right now. http://www.caringbridge.org/visit/mackenziebaysden

As much as I want God to heal her completely so she can grow old to help other kiddies with Cancer, I reckon the biggest prayer she needs now is just that God would be right there with her. That she wouldn’t be in pain, and that she can really enjoy her days – how many more she may be blessed with (that her days would be a blessing). (I’m gonna cry now, thinking about the world loosing this child) Thank you friends.

PS – check out some of the pics I added of Becca in the hospital

 

Saturday, August 29, 2009 9:35 AM

 

We got the stitches out this past Monday. That was a horrible experience. The wounds had healed almost too nicely, and so getting the stitches out was really hard. But Nurse Brandi was awesome and was really good with Becca. We’ve known Brandi for a long time in the Neuro clinic and she knows Becca well. After Becca got all the stitches out we visited the Treasure Box and Becca got to pick out a prize for being soo good. Becca is back in school after the surgery, and back onto her regular PT/OT schedule. She is so happy back in school. Actually Tuesday it was rather priceless. She practically raced down the hallway. I’ve never seen her walk so well and so determined to get where she was going! Granted the rest of the week didn’t go quite so nicely, but oh well.

Because Ms. Katie isn’t working at Lennox Baker any more we’ve had a bit of change in our PTs. Rebecca gets to work with Lisa Mangino again! That’s right – the same Lisa who worked with Becca for so long. We are so excited to have Lisa back in our lives again. Surgery for the Vagal Nerve Stimulator is still scheduled for September 9th. It should be an out-patient surgery, unless there are any kind of complications. Even if Rebecca has some issues waking up from anesthesia we’ll stay overnight. Granted, we want to be in and out, but we do have a safety net if needed.

 

 

Tuesday, November 4, 2008 11:46 AM

 

Just had to come in and share what a wonderful accomplishment Rebecca did today. She stood on her own (No support at all) for one whole minute! I was able to get her to stand several times, but her longest time this morning was 1 minute. I couldn’t convince her to take a step unsupported, but standing unsupported is still a major accomplishment. She was doing that some before all of her shunt surgeries (and even taking a couple steps).

This means we appear to FINALLY be back to where she was before all of this shunt stuff started. And with her new found energy, stamina and determination (of a typical 3 year old), she should start skyrocketing! I’d say our only problem is that she is doing some self-stimulation behavior. She is making grunting/growling noises and waving/smacking her right arm. She does this for hours on end (okay the better part of the day). She drives David and I crazy with her noise sometimes – especially at night when she won’t be quiet and go to bed. She doesn’t sleep like she should. So if you could, please keep Rebecca in your prayers that we could meet her sensory needs so that she could relax and not need to “self-stim” (a common behavior among kids with Special needs – esp those with Sensory issues aka Sensory Processing Disorder). And also pray that she could get the sleep she needs – so that David and I can get the sleep we need!

God bless you all –

 

 

Friday, November 14, 2008 9:04 AM

 

Well Rebecca has missed school this week because of a cold. I took her to the doctor yesterday because of a suspected ear infection. Sure enough, she does have an ear infection. Poor thing is hurting so bad in her right ear.

At least this morning she is finally getting some good sleep, her ear has hurt her so badly she hasn’t slept the past two mornings. Her seizures still seem to be doing okay (as good as okay is for her). Developmentally we continue to see improvement. We see her using her left hand a lot more, reaching for and attempting to manipulate toys. please continue all your prayers – they are working! We see the Neurologist on the 25th, Rebecca also has a MRI that day.

Please pray for the MRI to be clear. We also hope to talk to the Neurologist about getting an EEG for Rebecca, so pray that we will be able to arrange that without too much fuss.

 

Monday, November 24, 2008 1:25 PM

 

well we have moved Rebecca into her Big Girl bed! We bought her a nice bunk bed and David made some really nice railings for it. Now it is like she has a Twin sized crib. This way she has a bed big enough for her, but is still totally safe.

Wanted to let you know that we have a few important appointments this week. Tomorrow she has a MRI. Then Wednesday she has an EEG before we meet the new Neurologist (yes our appointment with the Neuro was changed).

Please keep us in your thoughts and prayers for these appointments. Pray that we get the kinds of results we need on the EEG, it is one of the few times we need her to actually have seizures. We need the doctors to see what has been going on.

 

 

Wednesday, November 26, 2008 5:47 PM

 

HAPPY THANKSGIVING

Yesterday was her MRI, all went well. The Gliomas are still gone! YIPPPIE Reason to be very thankful this Thanksgiving. Apparently the ventricles still look good, so this means that the shunt must be doing its job. Today was a long day for Rebecca. Aside from some confusion at Duke about getting from the main hospital over to Duke South (they got rid of the rapid transit system folks! Totally messed with my plan). We managed to make it to the EEG appointment not to late, or at least no one complained.

Rebecca was very patient with the nice nurse, Grace, making all the marks getting ready to hook up the electrodes. She started to loose her patience as all the electrodes were attached, but there were a lot of them to get hooked up, and it was a long time for David and I to keep her hands out of trouble. Then she had about twenty minutes of monitoring, including some photo stimulation (flashing the lights at her). The lights did NOT trigger anything, which we knew, she loves bright flashy lights. She had a small seizure event as she was getting hooked up, but nothing we could see during the monitoring time.

After the EEG we went and had lunch. Some minor trauma as I tried to get her through the turnstiles with the stroller – note to self – don’t try that again!

We went for our Appt with Dr. Mikati, and I am very happy with my decision to seek his opinions. First he took the most thorough history I have EVER had a doctor take. So the end results – what you’ve all waited for:

The EEG only showed activity on the right side of the brain, but of course didn’t really show them all the data they needed There are some neat MRI findings – basically if you look at the left side of the MRI the differences between the gray matter and white matter are very clear, on the Right side, not so much. This means that the right side of her brain is under-developed. This could explain why she has such weakness on the left.

He wants her to have a Video EEG to pinpoint all of her seizure activity.

There are really 3 options

Continue with meds – there are many other ones we can try. But she has

“Failed” so many, there is a slim chance a new one would work.

Immune therapy – this would be either a new round of ACTH, or IVIG

(Immuno-Globulin) Therapy. We could decide on this when she is admitted for the Video EEG

The other option would be surgery. There are several choices for surgery, the most common and the most effective is Function Hemispherectomy (I think that was the right name). Basically they remove a large section of the side of the brain causing the seizures. If needed they also disconnect the two halves (Corpus Callostomy I think). Putting in a VNS is another surgical option.We can also go back to the Low Glycemic Diet. Or if we push hard enough to get the right people on staff, start the Ketogenic Diet. But first Duke has to have the Dietitians who are willing and able to help administer it. Right now they don’t. However, they do now have a doctor who is trained

(Dr. Mikati).

Thanks for all your well wishes for her appointments!

 

Monday, December 22, 2008 10:13 AM

 

Wishing everyone a very Merry Christmas

Rebecca is doing well and very ready for Christmas.

My prayers go out to all of my caringbridge friends, those who have won many victories this year, those who are fighting hard, and especially those who earned their angel wings this year. Thank you for sharing your life. I pray that 2009 holds many good things for you and your family. May the Lord be with you.

 

 

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.

 

the incredible Shrinking tumor

 

Tuesday, January 2, 2007 7:24 PM

 

Christmas was wonderful. Rebecca had a great time, trying to unwrap her presents. She was a little overwhelmed by all her new toys, but she is very happy. Today was her second Chemo treatment. All went well. Because the antibiotic we give her three days a week was interfering with her blood counts we have had to switch to a different type that is given through an infusion once a month.

Happy news to report that Rebecca is crawling now. Not far and not much yet, but its still in the first few days of crawling. Thank you to everyone for your prayers!

 

Friday, January 26, 2007 9:31 AM

 

Rebecca’s Chemotherapy has continued to go well. Tuesday January 30th is her next dose. Chemo days prove to be very long days at Duke. We are very blessed to have dinner provided to us those nights. It is so wonderful to come home and not have to worry about fixing dinner after spending all day in clinic.

Rebecca’s antibiotic has been changed from something we give her 3 days a week to something she gets once a month, the week before chemo. The previous antibiotic was causing her blood counts to get all messed up. The antibiotic is to help prevent her from catching anything since her immunity is low.

We went to the eye doctor recently. Because the left eye has such poor vision and is “lazy”, we are now patching the right eye for two hours a day, every day. This will force her to use the left eye more and make it get stronger. She isn’t happy about it, but is tolerating it. Developmentally she is doing great. she loves to pull up to standing on anything she can get her hands on. She cruises pretty well on furniture, and walks holding onto someones hands. She loves to “sing” and babble. Our Becca is still our cuddle bug. Right now she is pulling on the laptop trying to get my attention.

 

Friday, February 16, 2007 9:58 AM

 

Things continue to go well for Rebecca. We’ve had a small personal hurdle of sleeping issues, but alas I think she is finally doing better at night again.

Rebecca’s next Chemo is set for February 27th. That is also the day of her first MRI after the Chemo has begun. This will tell us if we are going to continue on the Chemotherapy or not (or at least change the drug). If the tumor has grown her course of therapy will have to change. As long as it is stable, we will continue. Please pray that the tumor already shows signs of shrinkage. Also pray that we get through the day. We will arrive at Duke at 8:15 for her blood work, then she goes for her MRI at 9. She has a Dr’s appointment with the neurosurgeon at 11:45, and then when done with that she will get her chemo (which will take 3 hours).

 

Wednesday, February 28, 2007 7:50 AM

 

Rebecca had her MRI yesterday and things went GREAT! We got news that the Chemotherapy does appear to be working. Her tumors look like they have shrunk and the enhancement is gone. There was something about the images from the MRI not being done the exact same way as her previous MRI, so the Doctor didn’t have identical images to compare. Something like one was a 4mm slice and the other was a 5mm slice. The doctor also said that these tumors can shrink on their own – but he would like to think it is the Chemo. David and I would also like to think it is the Chemo as well, that we are not putting her through this for nothing. She will have another MRI in 3 months. Please continue to pray that by this time the tumors are gone!

 

Thursday, April 19, 2007 9:37 AM

 

Things are still going well for Rebecca. No independent steps yet – but hopefully soon. She is getting more confident of her own cruising along furniture, and sitting down though. Strange to think a few months ago we couldn’t convince this child to bend her knees to sit down (she just went straight legged back over).

Our little girl is almost 2 years old! Time flies. She has been having a few seizure clusters again. Please pray that these get under control again quickly.

Her next Chemo will be on May 1st.