One tough cookie

We were about 5 minutes from getting into my car to drive to Raleigh to pick up Grandma and then head to Lake Gaston for the weekend.
Then it happened. I was on facebook when I saw it happen. I knew she was going down with a seizure. I half screamed, half let out a gasp. I knew she was going down HARD. I closed and set down my laptop and raced to her. She was SCREAMING. Since I saw her grab her face near her eye, I did a quick check of that area before I let her bury her head into my chest as I did my best to comfort her. “Shh Becca, its okay.” “You’re okay baby, Momma loves you.” “I know that was scary.” All the usual things I say to her. I probably even sang her our song. It took her longer than usual, but in a few minutes she was calming down. Then I cued into something. I could hear the sniffling in her cry. Odd, I thought, she doesn’t usually cry real tears, and never gets the runny nose from crying hard. I pulled her back away from me so I could check her.
Then I saw it, blood. And a lot of blood. I panicked, I admit. My dress was covered, she was covered. I scooped her up and went for a tissue.
I discovered the source of the bleeding. A badly busted upper lip. I put pressure on the lip as best I could with a tissue. Not an easy task with a kid that barely even ever lets you wipe her messy face. She HATES having her head touched in any way, shape or form. I grabbed the phone and called her pediatrician office.
God Bless them. They are so great. I knew the nurse advice line could mean an hour or so before someone calls back, so I took the next logical steps. I pressed the button for appointments and explained to the receptionist what happened and able to be put through to a nurse right away.
I giggle remembering because I explained the situation that she had a seizure and fell. Their first concern of course was the seizure. Was it over. My thought “heck lady seizures are multiple times a day, every day, that is the least of my worries.”
She gave me advice to hold pressure for 20 minutes. I explained it had mostly stopped bleeding by then, it was kind of oozy (you’d get blood when you pressed the paper towel to it. By then I had gone and gotten some paper towels I ran through cold water before bringing to Becca.) As long as it was stopping bleeding, and since it appeared to be fairly surface there was no need for stitches. With a kid like Becca they can’t be done at your local urgent care. Nope, it would require a trip to the ER. PHEW we seemed to have escaped.
I called Grandma and let her know we’d be there a bit later, I needed to keep an eye on Becca for a bit. I told her what happened. I had already long since sent hubby a message (did that while on the phone with the Ped).
Within minutes my resilient kiddo was up and “running” around the house again. She was still wobbly, from the seizure and the trauma. I decided I wasn’t risking a second fall on her fresh wound so I scooped her up and loaded her up in the van.
We got to use her new EZ-On pro vest . This replaces her car seat. It is actually better for her, it means she can have a bit more freedom in the seat (including recline of her back seat.). But she still gets the positioning support to keep her upright and not leaning out of the seat.

my new seat

I will say I have since figured out I wasn’t quite using the car’s seatbelt right, but these were taken the day I got her new harness.

Here is Becca’s lip over the weekend.

Becca LOVES her boat rides. So much so this was her opinion after the ride was over and it was time to go back to the house.

Notice the GLARE in her eyes. She was one mad little girl.

She had a great weekend though. Swimming and boat rides, and of course being spoiled by PopPop and Grandma.

I took her to the Pediatrician Monday morning just to check her lip. I was worried about infection since it had some funky color to the wound. Thankfully he said mouth injuries “turn all kinds of funky colors as they heal” (yep his words), but it was better safe than sorry and to do antibiotics instead. God Bless a pediatrician who is cautious with Becca.

Her lip looks so much better with each passing day.

She is one tough cookie. Even right after her injury she was grabbing her sippy cup and drinking like nothing happened. That was my clue that we probably didn’t need the ER trip after all!

All this being said with how awesome she is, and how quickly she is healing I went ahead and have gotten her in to the Orthotics company to order a new helmet. I know her helmet from last year was a bit snug anyhow, so it was time for a new one. I decided to move on to the hard shelled helmet with a face bar. Her little mouth is too precious, and must be protected. She has far to many seizure events lately where she just gets very off balance and stumbles around. We aren’t simply fighting drop seizures anymore.

Please continue to pray for Becca as this demon called LGS continues to change and keeps us on our toes.

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Homeschooling

I feel I made the right choice to Homeschool Becca. She has had a really rough summer.
Becca was in a year round school. She would have gone back Mid July. Instead we’ve been home. She continues to have more rough days than good days.
Not simply the seizure monster, but its effects. Today she has slept and seized (and simply laid on the couch staring off into space).
School was hard on her. She sleeps a lot during the day. She was continually exhausted.
Now with David coming home for lunch and her having a bit more energy in the evening they get to see each other more.

Still trying to get a handle on exactly what I “do” with her for our schooling. She is so cognitively impaired.
hrmm. cognitively impaired. I’m still not used to writing that instead of Delayed. But the fact is Delayed means she will catch up (or close to it). However that is not the case for Becca. As a result of her seizures parts of her brain are being destroyed, never to be fixed. It is call Degeneration. It SUCKS. I have no idea how much, just that it shows up on her MRI report. You know those things a Parent reads but no doctor ever bothered to tell them. Yeah – that.

Tomorrow and Friday I take her for IVIG again. I have one other trick up my sleeve for the immediate future. When she first started IVIG it was when her dose of lamictal was adjusted. But the caveat is, the RX was not “brand name required” so she got generic. I found out its specifically the manufacturer Tarro. I’m going to talk to her doctors and get her back on this specific “brand” of generic.
Who knows, if this helps we will play with her other meds with the manufacturers.

Becca and I are looking forward to another weekend up at Lake Gaston. We leave Daddy at home and go spend a weekend with my parents. Becca LOVES the boat.
oddly she hates the wind blowing in her face from a car window, but get her out in the open air and sunshine and she just hits total relaxation. She even understands “go on boat ride”. Her face lights up with excitement!
Only gummy bears have an equal effect on her.

I’ll try to be better updating!

Remembering

When Becca was a baby I used to sing “Ba Ba Black sheep” to her. when she was a colicky infant it was what calmed her down, singing that over, and over (and over) again.
Over the past year or two I’ve had a different song I’ve sung to her. Just a silly one I made up.
I’ve sung other songs with the same melody as “Ba Ba Black sheep” (or similar). Not much reaction.
Last night I sung that to her again and her face LIT UP! She got the biggest smile. It was so sweet to know she does remember.
I should add to I change up the lyrics a little bit for her.
Ba ba black sheep have you any wool
Yes sir, yes sir three bags full
One for the master,
one for the dame
and one for the little Becca who lives down the lane.

Her silly song is as such
I love my Becca doodle babe (optional kiss on cheek)
Becca doodle babe (optional kiss on cheek)
Becca doodle babe (optional kiss on cheek)
I love my Becca doodle babe (optional kiss on cheek)
Till the end of day a a ays (kiss on cheek)

The tune is kinda like the chorus to that old song “Personality”

My little Becca bunny does not care that her momma can’t carry a tune at all. She just loves when I sing to her.

Godzilla girl is loose in the house

Becca has this growling noise she makes, very deep in the throat. We call her “Godzilla girl”. She had made this noise for years when she is happy or excited. It is her way of expressing herself. Lately she has taken to doing it for hours on end, the better part of the day, every day. Gets kind of old – quick!
I am pretty sure it has to do with her not tolerating one of her seizure medications. It has been worse since we went up on the dose.
Like any good parent I was calling her doctor about this. Trying to get them to adjust the dose or give her something to help relax her. We had to do a med, Clonidine, when she first started the Onfi to help with her behaviors. We did a TINY dose at night for about a month and didn’t need to continue.
So naturally I wanted to revisit this medication. I had zero luck contacting her Neurologist and was eventually advised to take her to the ER. I’m not kidding, they actually told me to take her to the ER.
So I did – we were already at Duke at the Children’s Health center when this bit of advice was given, so I just pushed her on over to the ER. There she was quickly treated and they agreed to reduce her Onfi and give a RX for clonidine. (See this Duke Neuro – was it REALLY that hard to do this over the phone with me, or get the PA to spend five minutes with us to give us this??)
Overall her growling was a bit better for a few days. She is going strong as I type this, but I’m doing my best to block her out. (she is also happily playing too)

Other than our mis-adventures dealing with Duke we have had a great summer so far!
Last weekend we went up to Lake Gaston and spent the weekend with my dad, Jacky and another family relative, Cathie (she is my dad’s cousin, and a very close family member).
We had a GREAT long three day weekend. We all go there Thursday night and had fun fun fun! Thursday when it was Jacky, Becca and I we went out for a swim. Becca loved her new float I rigged up

I took a regular big kid/adult float ring and had sewn straps around each side to attach in a pair of swim shorts. This gave her a seat in the ring – much like the baby ring floats have. We added in her life jacket to give her a bit more torso support.

Pretty much the height of relaxation for her! We also had multiple boat rides (a favorite of Becca). She got to ride on my dad’s new golf cart

and we had more birthday celebration (Becca just turned 8!!!)
All in all it was a great mini vacation. Just what we needed!
I guess even Godzilla needs a vacation now and then.

Oh – the Monday after we got back she had her 2nd IVIG infusion. It was a LONG day up in the day hospital at Duke, but she was great the whole day. I’m so excited about this treatment. IVIG is being used to help treat her seizures. It is greatly reducing her daily number of seizures.

Our unexpected Hospital stay

Like any story, the beginning is a good place to start.
Monday night Becca seemed more or less normal. Maybe a tad like she didn’t quite feel herself. I’d catch her rubbing her head a lot. As she was playing, before she went to bed she randomly cried for a few seconds. David or I had no idea why. I chalked it up to she didn’t quite feel good, probably a headache.
Tuesday morning. I go in to get her for school. Now on a normal day, I carry her downstairs and by the time we are in the den she is waking up good (usually ready to find a few toys). Tuesday, not so much. I laid her on the floor still more or less out cold. I fixed breakfast for us and still, not much reaction. I tried to get her to take a few bites of the cheesy scrambled eggs. No reaction when I put the bite of food to her lips. Normally if she is sleeping, I can put the food there, or open her mouth a tiny bit and once she realizes food is there she will eat. Not on Tuesday.
So at the time I chalked it up to “Well maybe she had a seizure a short time before I went in to get her and she is in a post-ictal sleep” So I let her be.
I sent a message to her teacher we might not there, but if we did make it she would be late for sure. This way they aren’t waiting for her during arrival time in the morning.
I let David know she was having a tough morning.
Over the next few hours she still slept. and slept. She would stir a bit when she had a seizure, and then settle right back down. I took my opportunity one of those times to wake her enough to change her clothes (oddly enough her diaper was still dry). I also helped her eat a banana and have some juice.
She acted like it was too much effort to hold her sippy cup, even to eat the bites of the banana. Seriously – if you’ve ever been really sick with something like the flu, and know how simply moving takes too much energy – that is the look she had. All the while she was laying on the floor snoozing I’d notice she seemed twitchy, her fingers, her hand, her feet. Just random twitches. NOT good. I gave her usual rescue med – but it did nothing.
Since we knew she had been playing with her right ear even more than usual, David and I decided we should have the ped check her. Plus we knew it would be good to have them check her over for some of the basics, before going straight to the ER.
Her right ear had a TON of wax, which they cleaned out. But the Ped and all the nursing staff saw how out of it Becca was and were very concerned. I’m so grateful to have a good Peds office, with staff who know Becca.
So after Visiting Dr. Pickens I came home and gathered a few things. I honestly left Becca sleeping in her car seat in our garage instead of pulling her out and inside for the 10 minutes or so I was inside (slid her door open so she’d have fresh air). Makes me glad to have the garage so I can do that safely.
I gathered some basics for an ER trip.
The ER started out like it always does – you check in, and within a very short time are called back to triage and then a room. I think within an hour, or maybe a little more she already had the CT scan and shunt series x-ray.
Then the waiting, and waiting. Doctors agreed it was concerning how lethargic she was. She did react when you did something she didn’t like – such as try to shine the pen light in her eyes. She could push you away and shut her eyes TIGHT.
The Shunt stuff checks out. Docs seem just less concerned.
I’m trying to push the concept to them this is a non-convulsive status event. Basically that means between all those visible seizures we see, she is having tons, and tons of sub-clinical ones (ones we don’t see).
They seem to think because she is able to purposefully push you away it can’t be that. yet this is the kid who will still try to eat or drink, or play during a typical seizure. There is ZERO reason the same thing couldn’t be happening now.

They give her .25 mg clonazepam. Only because they are so worried about how out of it she already is, that it would make that worse. After 30 some odd minutes (I could not keep track of time) with no reaction they gave the “other” .25 mg (other half of the pill).
Within a short time of this she did perk up a bit. however she was STILL seizing like crazy. I had given her .5 mg in the AM, with no result as I said.
With that much clonazepam in her, she should have NOT been having any kinds of seizures.
They decide to admit her, and monitor on EEG (DUH – hello – they could have hooked up an EEG hours ago).
We get up to a room around 10 or so. As anyone who has ever been admitted to the hospital knows, the check in once you are in a room takes a while. Nurse has a ton of questions, getting things set up, etc. Its close to midnight before I’m able to lay down on the recliner to sleep. At 2:30 the EEG tech shows up to hook her up. Becca sleeps through most of her hook up and overall tolerates that well. Between 4:30 and 5 I go back to sleep for about an hour.
Wednesday was MISERABLE – for me. The AC in the hospital wasn’t working right, so it was warm in there. Not bad if you are “normal” but when you yourself do not tolerate heat at all, it makes you one sick momma. I called David and asked him to come sooner than later, because I was already sick from the lack of sleep. I knew I felt horrible. I was eating ice cubes and rubbing my head with damp towels etc.
He got there and I slept for a while. Enough to help me at least be able to speak coherently again. David went home for a bit to get some small fans for the room, it was that bad. Again, by the time he got back I could barely stand. Even Becca’s nurse could see I was not doing well.
Wednesday evening they hooked up her IVIG – a treatment for her seizures.
http://lgsfoundation.org/ivig.html
Becca was already perking up quite a bit – but they also changed some of her other meds. She was still pretty sleepy though – but considering the amount of seizures she had the day before, it was to be expected. She was at least just sleepy, and not out of it entirely.
Thursday she woke up soo much better! We went for walks in her chair (her Convaid Cruiser wheelchair). We even did TWO laps around the unit with her walking! That is a long walk for her since she isn’t a good walker. All that time and not once did she try to just sit down. Thankfully doctors had rounded, seen how good she was doing, and saw her walking around so well.
We got her second round of IVIG Thursday afternoon and were able to come home.

As I understand things from the Neuro who was on service in the hospital the plan for IVIG is that we’ll touch base with her Neuro and decide over the next month how she does and if we want to continue IVIG. However as I understand IVIG, it would take more than just this one time of treatment (even though it was over two doses, its one treatment). So I’ll likely call her Neuro next week and talk to them.

We never really got answers from the doctors as to what happened. They seemed more worried about other stupid shit. Like how by the time we were in the ER her temp was 101 (it was 99 earlier at the Peds office) . But I knew that the amount of seizures she was having alone would cause her temp to go up. It came right back down with Tylenol. But of course they are assuming its some kind of infection. (as if a UTI could cause a kid to be practically unconscious!)
I’m positive it was NCSE (non-convulsive Status). I was positive that is what it was when we went to the ER.

Our plan today is to sleep and recover.
Thank you everyone for all your prayers through this. They really helped!

So much life – so little to say

Catching a few zzzz on my Christmas present from Santa

I feel badly that I have not updated this in so long. Yet how do you update a blog to say the same things over and over again? How do you write things that make you feel so utterly broken inside?

The “good” news, Rebecca’s tumor only grew a very small amount. This means we are waiting until March to scan again. We know the tumor will have to come out at some point. We originally thought the tumor was 5mm. This was based on our first phone call with Dr. Grant. However since he didn’t have the film in front of him, with the actual measurements, it was sort of a rough measurement. To him, it was just “tiny”.
In December we were comparing that scan to the old one. So we had them to measure side by side. The tumor was about 8mm when it was found. It was about 9mm in December. So about 1mm growth. This was considered good news, it means it is slow growing and not aggressive. Becca did not have to have surgery during the holidays. yeah – that is all old news. Now we just wait for March. Dr. Grant did say that it will have to come out eventually.

On the same token we continue to see an increase in seizures. I was able to get Becca into Neurology last week. It wasn’t with her regular Neurologist, but it was someone in the department at least. We’ve increased some of her meds. We’ve also changed her rescue med. (For those who understand this gunk – we increased her Onfi, and changed her from Diastat to Clonazepam). I found that because of how she gets into “trouble” with seizure activity, Diastat was just too hard to give. She doesn’t usually have true status seizures. It is more like she has what I call a “clusterfuck” – she will have back-to-back (to back) seizure events. Often a vicious cycle of complex partials and clusters of head drops, and back and forth. Since she is still conscious through all of this, giving her a tiny pill that will dissolve in her mouth will be much easier than trying to give her a medication that is administered rectally.

We are also still seeing quite a bit of fatigue. Poor girl is just so sleepy. Now before all of my good-natured friends and family jump to the conclusion that it is her shunt, we do know when she is awake, she is her normal hyper self. She also displays no other signs of shunt failure. Yet we continue to see her take 3 hour plus naps on the weekend, or any other time she is given half a chance. This all greatly affects her school performance.

The good news is Rebecca continues to show how smart she is, even though it is causing me many more gray hairs. Rebecca loves to test her boundaries. There are a few things that are off limits. Reaching over the gate into the kitchen is one of them (whether she is reaching for the trash can, or something on the kitchen counter.) She usually gets a couple warnings “Rebecca, No”, “Rebecca stop touching the trash can” etc. She KNOWS. She will turn and see who is watching. These days she takes it a step further. Because she knows I will give her a smack on the butt for misbehaving (after having been warned to stop, more than once) she will now either sit down, or put her hand over her butt as soon as she sees me move towards her to punish her. So she not only knows she is doing wrongly, she knows the consequence! What a stinker!
And no – time out would not work, this is a child with limited mobility. limiting her to her chair would not be punishment. Rewards have no meaning, so that would never work. Re-direct works for about, ohh 2 seconds.

So that is our life in a nutshell.

The double-edged sword

Our little Becca continues to grow up. She continues to battle the evil seizure monster. Yet something amazing is happening.
She knows when it is going to attack. Even more amazing – she is seeking out help before the seizure hits.
That’s right – she is coming to someone for help before the seizure hits!
The sad part of this is of course she understand enough of the seizures to know they are happening to her. It would be fabulous if she could be blissfully unaware of this whole horrible thing. However that is not the way it will be. I am glad she knows to come to Daddy or myself. For comfort and for safety.
Rebecca also continues to have bursts of vocalizations. We never hear anything consistent. Just a word here or there. Last night I heard her say “hungry” (and she was clearly already whining because she was hungry). Way to go Becca! She also got her cup and brought it to me and dropped it into my lap. Her way of saying “Here mom, fill this up for me”

We go to the Neurologist her regular Neurology visit. She will also have an EEG that day. Then next month will be her follow-up MRI.

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.

Lemonade

I saw a cute picture on Facebook the other day. It said “If life hands you Lemons, but doesn’t give you sugar and water your lemonade will suck”
I couldn’t help but chuckle.
But that also got me to thinking about Becca. It sure does seem like life has handed her lemons. Yet her attitude – eat the lemons, rind and all.
See, she doesn’t know different. She doesn’t know she is getting a sour deal. To her, this is just what it is – life. She is happy and content. She LOVES to snuggle with Daddy or myself. She giggles all the time. Even when she has a seizure, she is stopped only briefly from whatever she is doing.
That is the most amazing things about kids like Becca. By that I mean children born with special medical needs. To them it is normal to take multiple medications a day, to have seizures or whatever their needs are. There is nothing to feel sorry for her. She eats those lemons, and reaches for more. She loves life the way it is. So as much as it hurts us as parents to watch, we must understand that it is what it is. Sure I wish life would hand her gummy bears (her favorite food), but I’ve got to accept things.

There is so much in this world I wish for Rebecca. But the important things, I’m pretty sure she has. She is loved, and she knows so. She is not able to use the words, but she can tell others she loves them.

I’ll also never cease to be amazed at how hard she works for what she wants. This is a child who didn’t use to use her left hand – at all. With years of therapy it is now used daily. Sure she is still stronger on her right, but she is right-handed after all! She is still delayed with her fine motor skills. Yet this little girl is learning to use her pointer finger to access toys instead of pushing her whole fist into things. I love watching her play. I get to revel in how far she has come.

There are times when I see her against another child, especially one younger than her and it does make me sad for all the things she is unable to do. Yet all I have to remember is she is Becca, and as far as Becca goes she is perfect. She isn’t that other little 2nd grader down the hall. She isn’t her baby cousin. She is Becca. I love Becca – with all my heart and soul.

I look forward to watching her grow. To see what other new things she can learn. And each and every day I will remind her how much she I love her., and how perfect she is to me.

Family time

School started back up a month ago. So far she is having another stellar school year. I love the year round schedule. It works out so well for her.
I’ll get to the fun stuff first.
My brother came a couple of weeks ago, along with his family. They stayed at my dad’s house in Raleigh, but we spent as much time with them as we could.
This was the first time Rebecca got to meet her Uncle Steven, Aunt Karen and her Cousins (Josiah, Ashlynn, Joel and Allyson). It was soo much fun! I haven’t even seem them since the spring of 2004. The kids were so great with Rebecca and loved on her so much.

Snuggling cousins

Not sure who is happier – Uncle Steven or Becca

Happy, loving cousins!

Unfortunately I didn’t get one of each of the boys with Becca. But you better believe they loved her just as much as the girls.

Rick, me, and Steven

It was a great time. It was so hard saying goodbye to them as they left.

August also brought us some concerns. Back in late July at her neuro appointment her Neurologist decided to add a new drug to Becca’s regimen. We added Lyrica (you’ve probably seen commercials for it to treat Fibromyalgia – but it is also a seizure medication). Anyhow within a week of adding this medication when I went in to wake Becca for her night-time meds I could not rouse her. She may as well have been in deep sedation. That was scary! I got in touch with her doctor and we lowered the dose. She was still only getting a small portion of what her intended dose would be . She was only getting the medication once a day. A few weeks later we were seeing some troubling signs. She was staying tired and lethargic. She began to refuse to walk. You could try to get her to stand, and she may take one or two steps before lowering to the ground. She had a dull, listless look in her eyes. So, being the sensible parent I took her to the ER. The primary concern was her shunt was no longer working.

We had a horrible, rotten, no good experience with the hospital. They did the CT and x-ray in good time in the ER. BUT when the resident (aka Junior Neurosurgeon) came in to talk to me he said her ventricles were “a little enlarged”. He did say it was nothing like they were during her previous failures, but he neglected to say that the “little enlarged” was in comparison to her best CT scan ever. We were admitted and the next morning they did a shunt flow study. I was NEVER told the night before that was their intention. Nor was I told until we were waiting for this study that was their main reason for admitting her, because they couldn’t get that done the night before. Something about the tracer they inject isn’t something they keep around and they had to order the tracer. By order, what they meant was “mix up” (at first they made it seem like they had to get it from another facility).
FOUR hours after her scan the neurosurgeon came to talk to us. This was hours and hours of our sweet nurse paging anyone and everyone in Neurosurgery to come talk to us. Her scan was fine. But they wanted to keep her till Monday for observation (this was Friday night) and do a repeat CT scan. I said NO! We live 20 minutes away and will come back.
All this time they were lackadaisical about her flat affect and not being willing to walk. Neurology did adjust some of her meds (increasing the Trileptal).
We had her repeat scan outpatient on Tuesday evening and met with her Neurosurgeon Wednesday morning. The good thing is her scan is still stable (no change since the one in the hospital). Dr. Grant said that even if they saw that kind of scan in someone without a shunt it would still look perfect. (phew!)

This was taken when we were in the hospital. Anyone who knows Becca can take one look at her and see how “off” she looks. This is not how our sweet girl usually looks.

After we came home from the hospital I called her Neurologist, Dr. Mikati and demanded we take her off Lyrica. So I’ve weaned her off that. Now to see how well she does as that gets out of her system. You can already tell she feels soo much better. Her seizures are still kind of crazy, and that is going to have to be dealt with.

Becca has her annual MRI in about 2 weeks. This will be to check for any tumors, and to umm triple check (?) her shunt. Then in November we have a EEG for her, and another appointment with her Neurologist (Dr. Mikati).

She continues to amaze me with using her left hand, and her overall fine motor skills. She has periods of babbling a lot, then she goes silent again.

Continue to keep Becca in your prayers. Pray we find the right balance with these medications. I know God can, and will heal her completely in His own time, it is just very hard to wait for that sometimes.