save the brains

I’m sure all of my readers know that November is Epilepsy Awareness Month. (I do have readers… don’t I?)

I have written about our journey with epilepsy through this blog, as well as Caringbrigde (those entries can be found in the “about us” section). We’ve fought this demon for over 8 years now.

Becca has faced delays in development since she was an infant. At two months old she wasn’t turning her head and tracking like she should have been doing. Head control was lacking.

So many of my friends story of their child’s journey with Infantile Spasms or Lennox Gastaut detail how their child was developing normally until the seizures hit. Perhaps the child was even ahead.
Becca has never been developmentally normal much less ahead. However I have never given much thought to her regressing.

That is until today. I spent a little time looking through some old emails. The good thing about using MS Outlook to read my emails is I am able to save emails, even when our internet provider has changed over the years. I have emails dating back to January 2006.

I could see where I would talk with other families on this journey about my concerns and my joys. I could see where I would rejoice in new skills Becca had gained. I realized many of them were seen only briefly, sometimes to never be seen again. Sometimes the skills would just stay stagnate for years. Sure she was doing some cruising of furniture at 18 months. Little did I know at the time it would be years before she would actually walk on her own. That she would effectively stop crawling. So much so that if it were not for old emails or other journals I would think she never crawled.
I am shocked to see proof that she once babbled – A LOT. Now, she is quiet most of the day, making very few noises.

Rarely do I think in terms of what this horrible seizure disorder stole from her. Rather I think of what she never had. It is very sad to look back and see there have been times when she has a lot, and then it slipped away. Over and over again.
Lennox Gastaut is a horrible monster.
As she gets older I am seeing that more and more. I see what her having TWO episodes of Non-Convulsive Status Epilepticus this year have done to her.
So knowing the damage that the multiple seizures a day, every day has done to her brain I know that this November the idea of “Save the Brains” resonates even deeper with our family.


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

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.
poor widdle lip

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.

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.

So much life – so little to say

Catching a few zzzz on my Christmas present from Santa

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.

Continued Blessings

I wish we had tried this medication (onfi) years ago. Maybe it was not meant to be our miracle then, but it certainly appears to be so now. We continue to see fewer seizures. Like other successful treatments we are also seeing that many of the seizures she does have are shorter. Which means the events I do see are often REALLY short. It means I may be deluding myself in how few seizures she is having, simply because some of them are so short that I don’t see them, or can’t determine them to be seizures. Alas if I can not determine it to be a seizure I can not record it as such (and that is nothing new!)
This medication has one odd side effect. Well not odd per-say. It is making her hyper. She has these manic giggle fits. These are NOT gelastic seizures for any of my curious Epi friends (she has had those). Nope, this is plain and simple hyper mania brought on my medications. The medication that the Onfi is replacing was very sedating. We never really thought it sedated Becca so much until we took it away. The same can be said about the Keppra. We never saw Keppra rage, until we took Keppra away and she was calmer. Oh well. It is still to be determined if the Onfi is causing some ataxia (gait problems). We have our PT appointment tomorrow morning to see if Becca might benefit from AFOs.
Yesterday Becca had her dentist appointment. Technically it was considered surgery. We went to Wake Med – where her dentist does procedures (their office is on that side of Raleigh). Becca was put under General Anesthesia and had a full set of x-rays, a full cleaning and had sealants put on her 6 year old molars. She has had a cleaning but it was not as thorough as this one, since she doesn’t cooperate well. The other two things could not have been done without putting her to sleep. The dentist determined that her two lateral incisors were a bit loose, so she went ahead and extracted those. So Becca is back to being the toothless wonder. I’m glad the dentist took care of that. I knew she was due for more loose teeth, and I have hated this stress.
Her babbling continues. Some days more than others. Our biggest hurdle right now is her near constant chewing on her hand. The left fist is almost always in her mouth. No matter what David and I do, she puts it right back in her mouth. She thinks it is a game. She starts laughing when we scold her about her hand in her mouth. Her personality of being born a sixteen year old continues.
I guess that is about all I have to update for now. Things are going well. We are riding this high while it lasts. Loving every second.

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.

a low down dirty rotten thing to do to a person

So I have put off writing this entry for nearly a week. My heart aches as I write this. Most of my friends already know about this.
The special needs community was scammed by what we always thought was one of our own. Mike W. father of a cute little girl named Marissa, whom is said to have infantile spams, ran some contests. The most recent was for ipads. You may recall my blog post about it a while back. And yes, I have since edited that post. I refuse to give him the credit I originally gave him. Originally there were going to be 5 winners. That number kept increasing in number. Oddly enough from different emails that number varies. Then there was the addition of money for apps. Later money for a case was added in. The deal seemed to get better and better. All the while he had been collecting donations through “chip in” (a donation site, sort of like pay-pal or the like. I honestly don’t know much about them).
Then 40 winners were getting all of these ipads, and extra things. Then the delays started. I won’t list it all here, but I have all the emails, in a folder in Outlook on my computer.
After two long months folks were beyond frustrated. I mean who wouldn’t be. From what I can gather one of the “winners” talked to a friend who began to do some research. That’s when the proverbial shit hit the fan.
After a so called threatening email was sent to Mike, he supposedly contacted authorities. Honestly, I’ve read the e-mail. Was it the best way to approach things, no. But it was not threatening. The information the guy claimed to have was all information any good net-detective could find. I mean really folks, are you that naive to think that folks can’t fairly easily find your address and phone number? Especially if you own a domain! Hello! You can easily google “who owns a domain” and find it out! Its not private information! Anyhow I digress.
After all this came out, the contest was “temporarily halted”. The quotes of course because that was another one of his excuses. The internet assaults began. Blogs by other special needs parents (including went on a rampage. There have been multiple comment threads on Facebook. Yet still he remained vague.
Finally last night he came somewhat clean and said there will be no ipads. Not that there were never any ipads. But oh well, at least its a partial truth.
The funniest thing to me is he still claims he can not disclose who his bosses are. That his bosses have said if he ever discloses who they are he will be fired and loose all his benefits. I kid you not! Now this is a guy who lives in Virginia and telecommutes to a company in Cary, NC (well so he says – I’ll trust that as far as I can throw it, which – well lets just say I have no athletic talent at all). Now most of y’all know I live in Durham, NC. Just down the road from Cary, NC. Cary has some nice companies – but last time I checked, there were no companies that were THAT secretive! I mean even the CIA and FBI aren’t that hush hush! Who does he work for the MOB? Oh wait – should I have said that? if these were mob ipads I really don’t want one! *shudders at the thought* (I mean according to the snavenger dude who ousted him he does have a extensive criminal record — which BTW – would be public record unless it happened when he was a minor)

Anyhow – Becca is left without an ipad. BUT there is a silver lining.
Are you even still reading?
David bought an Andriod tablet a few months ago. He promised me if he really liked it, he might upgrade it around his birthday, then I would get it, and for my birthday I’d get money for apps and accessories. Seemed like a sweet deal to me. Anyhow his new dream tablet came out on Sunday. He had a major case of “I want” so in light of this whole ipad mess, he went out and got it. This way I can start fixing up the “old” tablet for Becca and I. Sure there are not near the apps for Android based tablets. But it is something. And this will give us a chance to see, with limited apps if Becca is even really responsive to this.
Then if she likes it, and can really use one, we will purchase her an ipad at Christmas. We will likely enlist friends and family to help us with money for apps then (she surely does not need $500 worth – that was excessive!). But I doubt family and friends who normally buy her stuff for Christmas would have issue with taking money they normally spend on toys and Clothes and spending it on an itunes gift card instead.

Overall Becca is doing fairly well. She has had some REALLY good days, and some not so good days. Kind of par for the course with Lennox-Gastaut Syndrome. Yesterday was freaking awesome! Today, kinda crappy. oh well, win some, lose some.
I have noticed something amazing the past few days, that her teachers will be thrilled with when she goes back to school. Her fine motor skills are soo much better. I was watching her carry a toy around. Just the way she was holding the toy as she walked was so much better. She had control of the toy. Her fingers were wrapped around the handle of the toy. Just like you would expect someone to carry the toy.
I couldn’t help but smile as I watched her.
I’ve also caught her carrying objects in her left hand as well. Which for those who have known her a long time would know it’s huge! This is a child that at one point and time barely even knew she had a left hand.

Anyhow – That’s all for now. I’ll probably update early next week once she starts back to school. My big, bad, awesome 1st grader. I know she is looking forward to seeing Ms. Deanna, Ms. Cyndi, Ms. Kathleen, and Ms. Cecila again. Along with all her friends. I LOVE her class at Easley!

Status Quo?

We’ve made it through a week and a half of summer break (aka intercession for kids in year round school like Becca).
I wish she would get the memo that with no school she can sleep in and take naps at her leisure. Neither of which is she doing lately. Don’t get me wrong, I’m glad the seizure monster isn’t making her have the need to sleep all day. However many parents know, the child who does not nap as they should turns into some kind of scary monster around diner time. I always know the days Becca didn’t nap at school. The cranky, whiny Becca comes out around 5pm. Couple this with her then not wanting to go to bed at her usual time, which for her is still 7pm. She has always self regulated herself to be ready for bed at that time. I remember as a baby she was hilarious, she could be WIDE awake at 6:45, even 6:55. But no sooner than the clock hit 7pm and she was laying down and going to sleep. It was always the strangest thing to see, but her internal rhythms had very accurate time telling abilities.
As I type, “She who does not sleep” laid down on the floor for one of her famous cat naps. She is also known for just laying down and taking a 5-10 minute nap and waking up ready to go. She is super cute these days because she now “gets” the concept of a blanket. So she will pull a nearby blanket over her, even spare clothing laying nearby will do as a blanket.

We’re muddling through this intercession. She isn’t driving me crazy (yet) with her need to get into anything and everything she isn’t supposed to get into. I guarantee you that by July 18th I will be more than ready to deposit her at Easley Elementary school.

Seizures are status-quo. She has good days and not so good days. The not so good days remain much better than last month. However we are still seeing more not-so good days than we were before we messed with her medications and the supplements. I still feel frustrated and hopeless with the Ketogenic diet. I still need to start deciding is it worth it all.

You may or may not notice I added one new thing to our blog. A button, along with the “about us” (or whatever I renamed it to) there is now a “Becca’s history”. I created a separate page that has all of her old Caringbridge journal entries. As of right now they are in reverse chronological order with no fancy formatting. However that may change if I ever get whim to do so. (so be warned if you start reading the order may spontaneously change in the next month or so).

Anyhow I think that is about all to report on Becca.
oh wait – I know. In honor of her birthday she now has TWO Mylar balloons to play with right now. She is so incredibly happy.

A great day!

The yucky, evil seizure monster gave Becca a birthday present yesterday. She had a good day. Now granted a good day for her entailed two seizures (one cluster of head drops, and one other fairly mild event), but still it was a good day with regard to seizures. That is a huge blessing.
This morning, before she has even gotten out of bed she has had a more severe seizure, to which she is currently “sleeping off”.
Things change day-to-day – hour by hour with epilepsy. But we take our great days when we get them. And a not so good start to the day doesn’t mean the rest of our day will not be awesome.

I also have developmental news to brag about. On Wednesday we opened a present that came in the mail. I opened the outer box and let Becca have at the gift bag inside. Other than a brief interest in the tissue paper, from which she was easily re-directed, she pulled out items and opened her own present. It was so great to see her investigating something like this. And it wasn’t the pull out, toss aside, reach in pull out, toss aside that we have seen before. This time she pulled out, actually checked out the item a bit, and then with a reminder, and moved back to the bag for more. She got 2 outfits and 2 board books. I think I had to help her a bit with the books, for her hand placement.
She also got several birthday cards over the past few days. Again – each one I started opening the envelope and let her rip open the rest of the envelope. I then helped her put her hand onto the card and she pulled the card out. Now for someone with a typical child this doesn’t seem like much. Anyone with a Special Needs child can understand how HUGE these tasks are. We never stop incorporating OT (occupational therapy) tasks into everyday things.

Hoping the rest of today is as awesome as yesterday. Although I could do without the cranky child portion.

Oh – 1 week of intercession down – 4 to go.

Birthday Girl

Happy Birthday to my Baby! Okay I know I’m still a day early – but as a mom I get rather retrospective around this time of year. Looking back remembering what it was like when I was in labor – having contractions for days. How amazingly easy the c-section went. Holding my sweet princess for the first time

I love looking back through the pictures of how she has grown over the past five years. Not sure what is wrong with the Flickr photostream as of the time of my typing this entry. Granted it seems like all of wordpress doesn’t like me anymore (their once awesome entry system isn’t doing what it did a few weeks ago). Of course – word from my friends who still use Caringbridge is they have been making all kinds of un-user friendly updates over there as well. So it isn’t just me finding all kinds of bad luck with the internet these days.

Becca is doing pretty well these days. Seizures are much more stable than they were a month ago. As of now she seems to fluctuate, really good days, then not so good days. Not sure if she is getting into things she shouldn’t or what. It’s always possible (or probable?) she is picking up things off the floor and eating them. Pieces lint, leaves – whatever else she can find. I read another parent sum it up well as “floor food” (granted they were referring to their typical toddler picking up Cheerios and such they had dropped). Kids do seem to like floor food (as disgusting as that sounds – its true – and if you can’t stomach that idea you shouldn’t become a parent).
We picked up her new helmet today. I opted for one of the custom colors this time. I was tired of the pepto pink that we’d had for all these years. No matter how much you decorate those things you just can’t get past the fact its a disgusting shade of pink. This time I chose what they call “baby blue”

And yet they call this "baby blue"

As you can see I’ve already decorated it, with rub on stickers. Butterflies and flowers. I find a well decorated helmet makes them much more child friendly when she wears it out in public. Sure other kids see the helmet, but they are much more inclined to see the stickers and decorations. It also keeps in line with having a fashionable little kid. I mean just because a child has special needs and has to have things like helmets, wheelchair or AFOs doesn’t mean they can’t look awesome doing so. Kudos to the makers of AFOs for finally making them with cool prints! (even though Becca walks well enough without them and has no need for them I know enough kids who wear them). Things like their wheelchair or walker can easily be ordered in really cool colors. Becca’s wheelchair she uses at school is HOT pink and has light- up casters. Do you know that other kids comment on the color and the cool light up casters. The get so excited about these things. It doesn’t even occur to them that Becca is “different” because she is using a wheelchair instead of walking down the hallway like them. They are too busy grabbing their friend to show off the light up wheels.

No big birthday plans. Next week Becca and I will head up to my dad’s place up at Lake Gaston (note to any psychos reading this blog – Daddy will still be at home so don’t try anything funny). Becca LOVES to ride on the boat my dad has. It’s to cute to watch her totally relax with the wind blowing in her hair.
School is out until July 18th so we have several weeks of fun at home.

Oh – I’ve got a favor to ask you all. I know I mentioned the great folks who are giving Rebecca an iPad. Well they are working hard to do the same thing for other Special Needs Children. So I’m doing my part to spread the word. If you are one of my friends with a SN child I encourage you to consider this opportunity. I know there is a $5 fee this time, and I’m sorry. If you don’t have a SN child, or already have an iPad for your child, please consider posting this on your blog or passing along the info. I do know this one is also open to educators of SN kids. . I’ve heard people comment that the link for the email tries to make you open outlook – so if you don’t use outlook here is a trick – simply move your mouse cursor over the link and the email will show up.

I think that’s about all for now. At least until I get another bug up my butt and decide to change the format again (what can I say – I haven’t found THE one yet)