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.

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Friday, July 16, 2010 1:15 PM, EDT

 

I can’t believe my baby girl starts Kindergarten on Monday! I am so excited for her.

Yesterday we had her open house at school. Now granted I’ve already met her teacher during Rebecca’s IEP meeting, but yesterday was the first time Rebecca and her teacher got to meet. Rebecca loved the classroom. She instantly started exploring the classroom – no fear. Not that I expected any. Rebecca is the type of kid if there is someone there willing to pick her up and hug her she is a-okay. Instant love between Rebecca and her teacher. This class is going to be great for Rebecca. She is in a class made up of Kindergarten through 5th graders – all with severe and profound special needs. Including Rebecca

there will be 8 kids in the class, a teacher and two assistants (this doesn’t include therapists who will be there to work with kids). As far as her seizures go we are holding steady. We had a little bump in

the road when we tried to wean her off of clonazepam. That turned out to be a mistake. Her seizures got worse. She started having bad atonic (drop) attacks. She was having more seizures each day as well. I spoke with her Neurologist and we went back onto her previous dose and things have slowly but surely returned to normal. We are still dealing with a strong gag reflex with seizures that is part of her new normal for seizures.

Sad to think that it has been nearly 5 years since we started seeing seizures. It was at her 2 month well baby visit that I convinced her pediatrician at the time that her repeated eyelid twitching episodes were

not normal. Yet in these 5 years, she has never stopped amazing me. She has an amazing wonderful determination. She has the most beautiful inner spirit. I love to snuggle with her, and just sit there, the two of us gazing into each others eyes – the same way most parents do with their newborn. Its a joy many nights going in at night to give her the late night dose of meds. I only barely have to wake her up to get her to take those pills. Then she snuggles back down to sleep. Although some nights she is

awake and playing when I go in. but I enjoy the nights when she is asleep. Then I get to watch her sleep.

My friends, you should all go in each night – at least for a week, and watch your children while they sleep. Give them a kiss. Tell them how much you love them, how beautiful they are, how much God loves them. I love to whisper these sweet notions into her ear while she dreams. Life is going to come at her hard and fast one day. I want her to to have absolutely no doubt by then that she is loved, she is beautiful and God loves her.

 

Friday, July 23, 2010 12:50 PM, EDT

 

I am so happy with how Rebecca’s first week has gone!

Monday was great. She instantly adapted to her new teachers and her new schedule. I got the cutest set of pictures, one of her in the car seat right before we got to school, one when I put in in the car seat at the end of the day, and one as we just pulled into the driveway at home. The first pic she has this “why are you taking another picture of me” expression.

Getting into the car at the end of the day, you can see her exhaustion, but she is all smiles. When we get home – she is zonked out. She was asleep, until she heard the camera.

The picture included for the journal is probably one of my favorites from that day. Its the encounter

of Rebecca and her teacher. So incredibly sweet. The first week, and few days back after an intercession back are always the hardest on her (she is in year round school, and was also for Pre-K). It just wears her out. I know she will be in bed super early tonight, and sleep in late tomorrow.

So happy news – part of the routine in her classroom is setting the kids on the potty at diaper change

times (most of the kids are not fully potty trained). The first 3 days, Rebecca of course hated sitting

on the potty (same reaction we’ve gotten at home). Well yesterday they finally had a special needs

potty chair. In the afternoon they set her there, she didn’t scream and fuss and just sat there like a

big girl and then……she peed in the potty!!!!!!

Thursdays have been one of our Therapy days for a long time. She is getting PT and OT on Thursday

afternoons. You may recall several months ago we decided to switch from PT twice a week to once a

week.

Well things continue to go so well that we are going to every other week. This is great! Another huge

step.

Seizures are doing a little better now that we are back on Clonazepam.

We’ll go back to Dr. Mikati in September. Around November is when we will have her annual MRI (our

first on our new Annual schedule – hard to believe it will have been that long between MRI scans)

We are working on self feeding – using a spoon, these days. She is doing better with this. The process

is still me holding her hand and guiding her through the motions, however she is getting the concept.

She loves to crawl up on the couch to snuggle or get attention. Its cute – except when she does it when

I am trying to eat something or use the laptop. Yesterday she crawled onto the couch and then tried to

climb into my lap (while the laptop was there). Okay, you say put the laptop down and snuggle your

child. But as soon as I do, she is ready to get back down on the floor and play again. Becca plays this

game of “up, down, spin around, elbow you in the ribs”

but all in all she is on a hot streak – the good kind!

 

Monday, August 9, 2010 12:05 PM, EDT

 

I don’t remember the exact dates – and those are rather irrelevant since it took me a while to get the doctors attention. The fact remains, we are now at 5 years of Rebecca having some type of seizures. It all started out with these strange little eyelid

twitches. At the time she was a colicky little almost 2 month old. I was still breastfeeding her. When these events would occur she would stop nursing. I knew in my heart, something was wrong. I tried to explain it to the Dr. who was our pediatrician at the time. He brushed me off. “Oh everyone’s eyelids do that now and then, its no big deal.” At our next visit a few weeks later I brought it up again. This time I was adamant. “NO! She stops nursing when it happens.”

I watched all the color drain from the man’s face. It was then I knew, in my heart that my fears were confirmed. This is serious. He suspected seizures. David and I had already talked, we were smart people. We had looked online. We suspected as much. We went to see the Neurologist at UNC. Appointment was horrible. By the time of our Appointment Rebecca’s seizures had changed. No

longer innocent looking eyelid twitches, she was having what is referred to as jack-knife seizures. Her arms flung out and her knees and legs pulled up – or something like that. We have old video. It looks like someone walks up to her and says “BOO!” but the scary part is it happens over and

over and over again in a period of 3 or 4 minutes. Occurring every few seconds. All in all, in that time she might have 50 to 100 seizures. We never really counted the number of individual seizures, not for years later. We were to focused on helping our baby through these horrid things. But at this first Neurology visit – the man they call a Doctor, did not care about our video. He didn’t spend much time with our child. He told us that she was having “simple partial seizures” and that surgery was likely

her best option. He sent us home with a prescription for Tegretol sprinkle capsules. Keep in mind – this was for a 2 month old breastfed infant! David and I were appalled. The MRI had not been done yet, simply ordered. No EEG had been done yet, a “routine” EEG was being ordered. We would learn soo much more about EEGs in years to come. I think we saw him on one follow up visit, him still insisting the same thing – despite the obvious pattern of her seizure.

All of that – 5 years ago.

We’ve come so far. Learned so much more about Epilepsy, Seizures, EEGs and everything else in this world. Rebecca has gone from that first diagnosis of “Simple Partial seizures” to Infantile Spasms, which has now progressed to Lennox-Gastaut. She will likely carry LGS for the rest of her life.

We will continue to hope and pray for a cure for Epilepsy.

I am so blessed that Rebecca is a fighter.

So no, we don’t have seizure control after these 5 years.

But we have a beautiful little girl who loves life. She loves people, giving hugs and kisses (big wet slobbery kisses!)

She is learning so much. Yes, she learns slower than everyone else, she learns at Becca speed.

Back when I was pregnant I never dreamed I’d spend my days searching though websites with adaptive equipment.

I dreamed of spending days at the park, pushing my little girl on the swings, chasing after her as she climbed up the slide.

It doesn’t matter that my days are not what I envisioned. I learned a long time ago to make peace with those dreams. I’ve been able to embrace a new future with Rebecca. One that involves getting snuggles on the couch for years to come.

You see, there are blessings to having a child with major special needs. The extra hugs. The reason to go into her room each night and watch her sleep (I have to give her medication each night).

5 years of epilepsy. Not what I dreamed about when I was pregnant, no. Nothing I’d wish on anyone. And I pray every day God will heal her. However in the meantime I’ll have to look into her sweet face when she climbs into my lap for a hug and a kiss and think, “I love you just the way you are!”

All things considered – doing great

Wednesday, January 20, 2010 4:11 PM

 

Rebecca is having a good 2010 so far. We are seeing lots of little things showing how much she is learning. So much improvement with how she plays with her toys. She is engaging with everything so much more. Seizure activity is up and down. But we are titrating down the Keppra. This is in hopes of adding Banzel later. Banzel is a drug specifically for kids with Lennox Gastaut. We wanted to get her off at least one of her other seizure medications that were not working very well before adding a  new one. Keppra was never very effective, but it does seem like each time we have a drop in the dose, there is a dramatic increase in activity for a few days. But then it levels off, back to a baseline. The good news is that there has been 4 weeks between drops in doses. The VNS still continues to do fairly well. By and large she is having fewer seizures, and mainly the events she does have are only about 30 seconds. I’ve been really trying to track them, and keep a record of how long they are lasting. I was shocked when I started to time them lately and seeing how short they were. Of course she may not think so. We are still seeing a pesky Atonic seizure pop up now and then – these are the ones where she just falls down to the ground. She looses all motor control. BAM. A little puddle of Becca. yeah, we need to make her wear her helmet more because of these. But she is a con artist, she knows how to act like she wants to snuggle with us like she wants to sleep, so we will take it off, and then Poof she is ready to play again.

We also often put the helmet on when she has clusters of head drops. To the untrained eye, these seizures might look like someone who is nodding off to sleep/fighting sleep. You know – the classic head falling forward then jerking back up – then a short time later repeating the pattern. Except for her, this goes on and on for several minutes. She might have upwards of 50 plus drops in that time. Being a little kid, she is still top heavy, and un-coordinated so these sometimes make her fall down. Hence, the need for the helmet when she is having these as well.

 

Saturday, February 13, 2010 11:14 AM

 

Just wanted to let you know I added a few photos from us playing in the latest NC snowfall today. Rebecca had fun playing in the snow. We didn’t get to play in the last snowfall because she was sick with a really bad chest infection. Today though, we got more snow and she got to play in things. She really seemed to like things. for a child who used to HATE cold things, she wasn’t hesitant to touch the snow, taste the snow or be outside. Her boots made it a little hard to walk around, so she wasn’t very  eager to move but she didn’t do too bad (then again snow boots make it hard for “normal” folks to walk!) Seizure activity is still so-so but we are still going along with the Keppra wean. So the fact things aren’t getting worse is good.

Soon we start with the big transition to Kindergarten for Rebecca.

Another EEG is planned for March 3, and follow up Doctor appointment with Dr. Mikati on March 4th.

I’ll update when I know more from that appt.

HAPPY VALENTINES DAY

 

Sunday, March 21, 2010 4:28 PM

 

Rebecca is doing fairly well these days. So I don’t have much details from our recent EEG. Mainly because we nearly forgot to ask the doctor about the EEG! He looked it up while we stood in the hallway as we were on our way out the door. Still shows seizure activity, but something about the wave form patterns or amplitude or something (?) was within normal limits for her age. Overall the EEG

looked better. I think all David and I really took home was “Better”. So far it really appears the VNS is a blessing! Sure we don’t have total seizure control – but its only a tiny fraction of patients that achieve that. We are happy we are in the percentage that have reduced seizures, reduced length of seizures she is having. Her quality of life is going up. This means also we are weaning her off some of the medications we know haven’t done much for her. This may allow us room later to put something different on. But even getting her off so many medications will improve her quality of life. Those medications are really hard on a developing mind.

She is a VERY active child now. Who would have thought she has only been walking a year. She is now learning how to go up and down stairs. She can do it, but still needs some assistance. She is learning to walk

She can do it, but still needs some assistance. She is learning to walk across the parking lot, holding hands like a big girl – this is more of a cognitive skill than anything else. Our next big thing will be her transition meeting in May. This will be when we iron out all the details of her moving from Pre-K to kindergarten! As for her annual IEP, which was earlier this month, we did decide to move her to “Support Services” for PT, which means she access the school environment on her own power now, and no long needs Physical Therapy at school. She still gets OT and speech, and we still do PT and OT on a private basis. But moving to support services is a big step. The PT will still be available to her, should she need it, should anything come up – but there just won’t be a set “15 minutes a week” or anything like that. But if say, the teachers notice Rebecca’s gait is all wonky – they can have the PT come in and take a look at things.

 

 

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.