Logen's April 2010 St Louis Appointments

We are Cleveland bound, so I thought now would be a good time to update on yesterday's appointments. We were at the hospital ALL DAY LONG! By the end of it, we were all extremely cranky and no fun to be around.

Epilepsy Appt:

Needs to do another 2-3 night stay in the hospital for a video EEG. His last one (was in Sept 2009 & was only 30 mins) didn't show seizure activity, just a lot of "spikes"/abnormal brain activity. His activity occured mostly in the right side of the brain and all over (multifocal). His doc is thinking he may have a condition were his seizures occur mainly at night (or when he is sleeping). We know his brain activity is much different when he is sleeping from his hospital stay in Dec '08. I cannot remember what they called it then, it'd have to go sift through papers. So, the decision was to stay on his current seizure treatment plan. (Topamax twice daily, Klonopin PRN, and Diastat PRN)

Neuro Appt:

1) We have no more information on Logen's "disease" than we did on our last trip- besides knowing what it's not. His mitochondria do not function normally, the area's we know for sure aren't normal are "Complex 1 & Complex 3". On every genetic test we do with the Mitochondria (ex. mtDNA), everything comes back normal. We know he has "type 2 muscle atrophy". We do not know what has caused any of this (hince negative mito genetic tests). Any positive test could possibly give us things like a prognosis (what every parent wants). Advances in Mito Medicine are incessantly being made, so we are very hopeful.

2) Many medicinal changes:

A) Moving to the "liposomal Ubiquinol form" of his CoQ10 (in the Mito cocktail). It's suppose to absorb into the body better and be a more "active form".

B) Start a Pyridoxal Phosphate. It's a derivative of B6. However, this has proven to help with seizures. And, it's "natural"- so why not try it?

C) Try Papaya Enzymes for drooling. Since Logen's swallowing function seems to be declining, we want to limit the possibility of his aspirating his own secretions. Dr B wants us to try a natural supplement before we look into Rx meds.

D) Start probiotics (Dr B recommends "Gut Buddies" from Epic4Health, they are the company that makes the FDA approved Mito Supplements) & ground flax seed.

3) Switch Logen to dairy free supplements. Oh, this will be the most difficult change. Parker is already on a dairy free diet (for the most part), so knowing what to cook, etc isn't going to be to bad. Mr Logen is a dairy freak! He is a lover of yogurt, pudding, ice cream, etc. All of which can be bought dairy free (thankfully!). It's just going to be training him he can't have those things, or they need to be ingested in very small amounts.

Extra Stuff : We did a hip x-ray, labs to check for B-12 deficiency, serum ferritin, CBC with diff, etc, had another EKG to check for conduction defects (worried about his blue toes/hands)

Logen Man Update

Logen is doing pretty good. He's not limping very much anymore. He will beable to swim (and resume pool therapy- his favorite form of therapy!) by the end of this week. He pulled his bandage off last week and his surgical site was still a little bloody and swollen so I just put a bandaide back on it. (There's a facebook picture on my mobile uploads).

We have seen an increase in seizures in the last month.

It's re-eval time again (OT). Speech was in May. PT is soon as well. On our IEP no progress was made during the school year. He has lost skills in OT as well as Speech in our private therapy evals. Just asking for prayers here. We are also strongly considering a change in schools. This was discussed in the last IEP meeting due to several injuries (quite a few unexplained ones) Logen came home with. All of this is another post in itself.

We won't have results from the skin or muscle biops for about 3 months. They will send the CSF results and the RMR results at the same time.

Dr. Shoffner sent me the clinic notes from the appointment and I will post the "important" ones soon.

I'm playing catch up on homework now (well, avoiding it actually).

Thank you all for the continued prayers.

Busy, Busy!

I am working on putting together a flyer for Logen. Putting his 5 years of life (and testing) into 2 paragraphs isn't an easy task. I have to get this done asap so we can begin with posting them/handing out!

I will go to banks tomorrow to set up a donation account. I am also going to talk to our tax lady. A few Wal-Mart vendors told us they need a tax ID number inorder to make donations (of either product or of monetary value)

I will be setting up a blog for just Logen. I am still going to keep my blog up to date. I will most likely post the same here an there, but will keep the emotions at bay on his blog. It will be factual. It will be the site listed on the flyers, where people that are interested can go to learn more about my little man.

I'm not dropping any classes. I've had many papers due in the last week and it's really hard to get done. I'm not on the "school track" right now. I haven't gone to one class since before St Louis, and I will email tomorrow and beg for forgiveness. I know this is bad.

Parker was sick (and I am not 100% convinced it's gone). I took him to the Dr yesterday, by the time we got there his temp was 104.3! We did a flu swab and a strep swab- both negative. His ears looked ok, but Parker kept jerking so he wasn't sure they weren't a little infected. The Dr gave him an antibiotic- he's not had a temp since a few hours after starting it, so maybe it was something bacterial?!

Logen doesn't have the flu anymore, but he's still snotty. Maybe it's allergies (or sinus stuff). He's not eating. I mean, way worse than he was with just the Keppra. He's now on 2 meds with decreased appetite, so this is to be expeted. I can't wait for him to be off the Keppra completely. The Topamax seems to be doing the job, unless we are in the honey-moon phase. Keep your fingers crossed!!!!

Working on getting medical records gathered.

Logen goes in for his thyroid labs Thursday.

We head to our local children's hosp (4 hours south) Thursday night after Adam gets off work (Also our 5 year Anniversary!) Logen sees the Endocrinologist and geneticist. I do not think we will learn anything, I have not heard vry many good things about the E, however we have had the appt since the beginning of Decemeber- so we are going to go.

Thank you guys for your continued prayers!! We are so blessed!

Neuro Center

Deep Breath. Ok. Go!

Logen saw Dr Brunstrom yesterday. Dr B and her staff spent a good 4 hours with us. They are remarkable.

1) The "tumor" on Logen's leg was not all removed. She suggests a plastic surgeon remove he rest of the tumor and fix the scar on his leg, he can make it nearly invisable. We knew shortly after the bandage removed that it still did not look right. Once again, there goes my faith in our local Children's hosp. A few pages in Logen's medical chart were removed before they were sent to us. Also fishy.

2) We are going to order a Mckie hand splint with a supinator strap for Logen's left hand. This will help keep his thumb out. Insurance won't pay for it and neither will medicaid- so it's an out of pocket expense. He won't wear it all the time. We will put it on him when he's working (coloring, puzzles, shape sorting, etc)

3) Repeat Swallow Study, done in specific ways. Once it gets closer to time for the study- I will post on this.

4) Growth: he's falling off the charts. No growth has been made since she began seeing him in 2007. We will check his thyroid functions. However, this can also be resulting from a mitochondrial disorder.

5) And for the big stuff.

* She's referring us to John M Shoffner in Atlanta, GA for a fresh muscle biopsy. While there he will undergo more extensive testing as well- a spinal tap, amino acids levels, metabolic functions, genetic testing, etc. The lost of testing they do is long. Check out their website. Wow.

* Dr S will not see us until I have every medical record on Logen from birth to now. Our hosp is not cooperating with me so far. Our ped's office has also called and asked for the EEG on disk. We keep getting told it's to large to copy. They won't release the report either. And, apparently nobody knows anything about the missing pages in his medical history.

* We are looking at possible Mitchondral disorders/diseases now.
* There are many precautions they gave us.
* avoid prolonged fasting. She said not to let Logen go any longer than 8-10 hours w/o food. This means waking him up if he's sleeping.
* avoid extreme exhaustion
* avoid overheating
* all of the above can lead to brain damage if it is mitochondrial

* We are limited in medications for seizure control b/c of the way the body processes the meds. Mito disorder + certain meds = bad!

* Once we do the testing, results for the biopsy take about 3 months to come back. We can have the spinal tap results in 2-3 weeks.

* If we do not get Logen in to see Dr S in the next 3 months, we need to do the spinal tap before hand. We need to eval his CSF neurotransmitters and look for a cerebral folate deficiency. If he has a deficiency a medication can be given to fix! Dr B has seen major improvements with the med! IF we do the testing here, it will take about a month to get back.


ASKING FOR HELP!

* Just to do the testing with Dr S is $20,000.00+. Medicaid will not cover this b/c it's out of state. I am checking into our insurance. The minimum we would pay is 30% of all costs. We also need to get there (16-18 hours away).

* I need ideas on fund raisers. Anything you can come up with be so helpful. Any way you can think of to help us raise money for the testing, we appreciate!

* We also need prayer warriors!!!!! And lots of them! :)

Epilepsy Center Appointment 3/2009

Logen saw Dr . Thio yesterday. Dr Lui Lin Thio is the Director of the Pediatric Epilepsy Center at SLCH. He is a very knowledgable man who spent an hour and a half with us. He made sure we had all of our questions answered plus some! It was wonderful!!!

This is what we learned about Logen regarding sezures:

* We moved from a "seizure disorder" diagnosis to an "epilepsy" diagnosis

* Multiple seizure types- tonic/clonic, myoclonic, and partial

* His seizures are generalized {best he can tell}- meaning they do not start in one area of the brain (those are focalized seizures)

* Dr Thio *thinks* Logen may have "Medically Intractable Epilepsy" meaning medications may not control Logen seizures. He's had 2 drug failures so far. We are limited in medications we can use (above post)

* Possible candidate for Epilepsy surgery- however, since Logen's seizures are not focalized, the surgery may not happen. He considers this a possiblity b/c of the extensive presurgical evaluation. We may do the eval, but the surgery is not likely.

* Vagus Nerve Stimulation (click the name for its description)

* We will increase his Topamax to 15mg, 2x/day. We will begin weaning Keppra soon. Hopefully we can start that in 1 week. It will depend on how Logen reacts to the Topamax.

YAY! An Added Appointment.

St Louis called this morning and they were able to get Logen in to see the Epilepsy specialist right before we see Dr B! I am very excited about this. They said they had to go straight to the Dr and presented Log's case and he said, "Yes. I want to see him. Put him down at 1." YAY!!!!!!!!! We are excited!!!

I am also waiting for the nurse to call me back regarding his meds. He's been on 15mg of Topamax for 1 week now. Since he's been ill, I'm not sure what to think of it. I can't say we've seen an increase in seizures - but we never do when he's ill - so? Guess we go from here. We will begin to taper off of his Keppra (another Yay!) I hate that stuff!!!!!!!

Logen Update 3/23

Things are still not great. We started a new med for seizures last week. He's now taking Keppra 2x a day and Topamax once a day for them. I am suppose to call St Louis tomorrow to see where to go next. We are going to be weaning from the Keppra and upping the Topamax slowly. We go to St Louis very soon, I am hoping (as much as I want Logen to get out of this funk) that he stays doing poorly for the next week so that the neuro can see this.

This is the 2nd week in a row that the OT has said his facial muscles are VERY tight. He hasn't eatten much since Thursday. Today, half a blueberry muffin and a few bites of oatmeal. Minimal food. Which, is not helping with the weight gain area. We are pumping him full of pediasure trying our best to sneak in calories where we can. He started running a fever, green snot, and a nasty cough (that can't be suppressed with RX cough med). I am taking him to the ped tomorrow morning, when I called today at 4 we weren't able to get in. He's not sleeping well. He's still tripping and falling on nothing. He seems very weak and tired. Which, could be from lack of food- but I think there's something more there that we are missing. His drooling has increased. I keep waiting for a major seizure that we see with convulsions, but haven't seen anything yet.

Please, Please, Please keep Mr Logen in your prayers.

Recent Genetics Clinic Note

A lot has happened in the last week. I received a large packet of medical records on Logen to take to St Louis. I have several things to post- But, I'll start here-

Dear Dr F,
I had the opportunity to see your patient, Logen, in the genetics clinic here at ___. As you may be aware, Logen has a very complicated medical history. He has been seen by mulitple specialists including Neurologists and a neurogentic work up has been initiated. To date, he has had prometaphase choromosome studies, advanced micro-array studies, and chromosome 15 methylation studies. All of these were normal. In brief, then, there is currently no unifying diagnosis for Logen's constellation of problems.

In reviewing his case with his parents then, the major problem list at this point in time include:
1) Significant neurodevelopmental delays (particularly in speech production)
2) Asymmetric spasticity
3) Seizure disorder
4) Lipoblastoma of the thigh
5) Craniofacial Dysmorphisms (on my examination today, I felt he had distinct flattening of the midface, prominent epicanthal folds, and an upturned nose. Below the neck he had no striking congenital anomalies that I could detect.)

I discussed with his parents that he has a very good and thoughtful first round evaluation. A second-tier would be indicated. They were agreeable to this. Given the constellation of spasticity and seizures, I did do MECP2 gene testing and ARX gene testing as well. Also, given the lipomatous tumor on his thigh, I also did PTEN gene testing.

We will follow up with the family once these results are available. ..... I did also briefly broach the possibilty of a third tier of evaluations for their consideration. This would include a work up targeted more towards mitochondrial/metabolic disorders.


~~~~~~~~~~~~~~~~~~~~~~~~~~~

We found out on Monday that the tests above were *normal*. These were the ones we waited over 7 weeks on. He has an appointment to see an Endocrinologist and the Geneticist in early April. We will do the 3rd tier testing at that appointment. And, I'm sure it'll take another 2 months or longer to get those results back.

His Neuro has ordered a spinal tap. There is something (I can't remember- I wrote it down, somewhere!) in the CSF that can cause some of his 'problems'. The only way to know is through a spinal tap (which scares me....)

This week has been off. He's had seizures and his behavior has been very aggressive- he's not listening, behaving, etc. I spoke with a nurse from St Louis every day last week- thats why I just love them . They called ME to check on him. They are working on getting him in to see an Epilepsy Doc asap and the neuro in the same day. (B/c of our travel) Our dr has a 6-8 month wait list, so this isn't easy!

Logen~ Funky Stuff

Logen had a rough behavior weekend. I really think it's the Keppra. His PT didn't know we uped the med and she asked if he was taking anything for muscles problems. (can't remember her exact words) His feeding/drinking is in one of those 'down-hill' slumps. He looses his drink out the corners of his mouth and he's not chewing. Muscle weakness is a side effect of the drug- so I'm wondering if it's messing with his already weak facial muscles.
I spoke with a nurse in St Louis yesterday. Dr B is out sick- so I'm not sure when we will get the 'final say' on the meds. The APN felt it was time for a med change. I am pushing for this. I think we've given the drug a fair go. We are still having seizures and there are just to many side effects of the med to stay on it. It's making Logen 'not Logen'. My baby has always been a sweet, loving, complient little man who loves to eat. There are days when he screams bloody murder b/c hes mad (for an hour or longer), he doesn't eat or his eating is horrible, he just isn't himself. That's the best way to explain it. We don't miss meds- they are given at the same time everyday. We don't dare to mess with it! So, we are back to the original dose until Dr B gives further instruction. We had increased just the morning dose last week- so atleast it's not a major change. I cannot wait to get him off of this med!

UGH!

Logen had a seizure at school this morning. :( He went to the nurses office for a bit to re-gain color and 'perkiness'.

I look like I've been hit by about 10 Mac trucks, worse- I feel like I've been run over by about 35 of them. You know it's bad when a dear friend says you look rough. It has been the week from hell. Pardon my language.

Logen has a Dr's appt this afternoon, will update soon.

Happy Note: He made a 6-hit sequence on his "talker" w/ Ms Gail yesterday!!!!!!! More than once... he did it before he put in every single puzzle piece. Not b/c she asked him to, but b/c Logen wanted to! I was so stinkin' excited!

Logen- No Food?!

I'm not sure what's going on with Logen now. I don't know if this is a side effect of the Keppra of what. He's not eaten breakfast OR lunch since he's been home for the break. His teacher says he eats at school. I'm skeptical now. What they say is eating may not be eating to me. So, I'm calling the Neuro first thing in the morning to ask. Our last appt she brought up his weight gain- and some concerns. He's been in the same size since before Parker got here!!! Jan 2006 I remember buying some pants he can still wear. We increased the does to 2x/day on Thanksgiving- and we've seen no seizure activity since! (YAY Logen!) We shall see on the eating. Say a prayer for the little guy. And his Momma. I've been having some nasty chest pain the last few days. :(

Logen is now up to 6 medications a day. He's 5!!!!! This is insane!

Updates On Us All

Things have been rough for the last few days! My hospital stay was less than desirable. I've never had my blood drawn that many times. I woke up at 4am Saturday to the lab tech rubbing my arm with alcohol. I gave up after that. And, if a respiratory therapist comes in to do an ABG (arterial blood gas) or 2 or 3 RUN! Those suckers hurt, left my arm in pain for a while (so much so I couldn't text or hold up my book)

So far- we know nothing more than we did going into the hospital. And, I'm home. I went in today for the echo stress test. With the holidays we aren't sure when the results will be given. They did start me on a heart med today just to see if we could control the fluctuations. My HR climbed to 197 today during the test. The lady seemed a bit surprised a otherwise healthy 24 y/o could manage a HR that high. Congrats to me... haha

I went to Wal-Mart with Adam and it was terrible. I couldn't see 10 feet in front of me. The store began tunneling in on me, things got blurry, and I felt 'floaty'. It's a horrible feeling to have. I can't exercise, I can't go to the store- so we have to get this figured out soon. 'Cause I've got things that I've gotta do!

So, that's what we know. Nothing. I know it's not just 'nothing' when my actual Doc (and not the nurse) calls to check on me and says she didn't sleep last night b/c she was concerned though.

Mr Logen is doing well on the Keppra. We've not seen a seizure since we started it!!! YAY! Still planning on the videoed EEG in December. He's enjoying his break and staying home! Those 6am mornings were wearing on him!

Parker is busy being Parker! He's calling Adam "Adme" and me "ess-e-ka". He's a little mess. At dinner tonight he looked at Logen and very clearly said (and know, nothing he's said has been 'clear') "Bubba is funn-e" We got him on video last night dancing to Christmas tunes. Priceless. Logen was chillin' eating Lucky Charms- we got that on video too :)

Adam is working like a dawg. It's 'peak season'. We won't know who he is until after Christmas unfortunately!

If it weren't for my drama, I suppose things would be fairly calm here. It's always something, isn't it?!?!

More Seizures = More Meds

Logen: last night was strange. He had a (or several, not really sure) seizure lasting 45 minutes'ish'. He would go in and out of it. Out for 30 seconds (bobbing head, stiff arms, just basically he wasn't 'there') and back in for a minute. Repeat about 1,000 times. I lost count. We gave Klonopin, again. This makes him (and Adam & I) crazy. It irritates him. He is unable to sit still. He went on a cleaning spree and put every pair of shoes in the living room away. He picked up toys. And he did this for 20 minutes. (Logen doesn't just pick up things like this. He's usually asked to do so and still has to be directed) Another odd thing (about 15 minutes after K admin) he was standing in the shower and had a BM. And, he was completely unaware of what happened. When Logen has an accident (such as urinating out of a pull up, 'shower poo' is not an ordinary occurrence) he may not always know it's coming, but he knows once he's done it and he gets Adam or I's attention (or tries to clean it up himself). He made himself a human canvas. It was cute and he was very proud of himself. He sat in the living room floor with a pen and colored all over his leg. We considered it therapy, he had many vocalizations! We did get pictures and I will post when I upload them. He was up and down most of the night.

I spoke with the Neuro's office this morning. We are going to go back down on his dose of Zonegran (3 in the AM/4 PM) and add Keppra. We will do 1.5mL for 7 days, increase to 2x/day for 7 days and then give full report to the office to see where to go next.

Logen has a 24 hour minimum videoed EEG scheduled December 16th. We haven't quite figured out the logistics since Parker won't be allowed to camp over night and neither parent wants to leave Logen...

Logen Update

That look in your child's eyes when they try really hard to do something their same age peers are doing and can't hurts. Logen tries... he works very hard. He is such a motivated little guy. And, that glimmer in his eye when he just can't quite get it crushes me. I hate it for him.

Update~ He had about 4 seizures between 4:30pm and 9:00pm. We ask for your prayers as we are working on figuring out whats going on. I spoke the neuro nurse several times today and yesterday. We are trying to figure out how to get his videoed EEG done ASAP. The neuro feels that we are no on the right med at this point, however- she doesn't want to change it w/o seeing ATLEAST 24hours of an EEG. I will update on this as I get more info. Continue the prayers!!! Thanks!

Increase In Seizures

We are waiting for lab results- if they are 'clear' then we will 'up' Logen's seizure med once again.

Logen had about 10-11 seizures from after school to bedtime Friday. We administered his Klonopin.
Saturday: around 5 seizures noted (hard to say since he doesn't sit right in front of us the entire time he's awake)
Sunday: 3 WEIRD seizures. A NEW form... we've not had before. He was sitting at the table and it was like he lost control of his neck. His head flopped back until we caught it and his body jerked slightly. His eyes were glazed over- he did not blink when we waved our hands in his faces. And, he giggled every time he came out of it. Strange!
Monday: 1 at school, several at home- 'weird' ones

Will update on this when I hear back from St Louis. I was impressed that the Neuro called to check on Logen Friday (I just listened to my voice mails this morning...)
I have a test I need to study for....

Another Call From St Louis

I spoke with the nurse again today. It's almost freaky having a Dr's office call YOU to check on your child.
Here's our most recent plan.
* Blood work- she faxed me the script and we will do this *hopefully* tomorrow afternoon.
* He's up to 75mg AM and 100mg PM on the Zonegran. He cannot go up to much farther on the dose- which mean if he continues to have seizures, we may be switching medications.
* Admission to the St Louis hospital for a 24-48 hour (could be longer, but no shorter) ' videoed seizure watch'. We will begin the paper work for this. She said since he's not having *major* seizures everyday they wouldn't push this to be done now. It will be most likely Decemeber when we get this done.

I asked about a fMRI. The nurse said she would ask Dr Brunstrom and get back to me.
Some of you maybe interested in this. It's a functional MRI.

fMRI is becoming the diagnostic method of choice for learning how a normal, diseased or injured brain is working, as well as for assessing the potential risks of surgery or other invasive treatments of the brain.

Physicians perform fMRI to:
* examine the anatomy of the brain.
* determine precisely which part of the brain is handling critical functions such as thought, speech, movement and sensation, which is called brain mapping.
* help assess the effects of stroke, trauma or degenerative disease (such as Alzheimer's) on brain function.
* monitor the growth and function of brain tumors.
*guide the planning of surgery, radiation therapy, or other surgical treatments for the brain.




*** brain mapping
Mapping the brain's surface using small electrodes to stimulate a nerve so its electrical response can be measured. By determining the role of specific nerves in a patient, this technique helps surgeons avoid damage to sensitive areas while operating on the brain.

Seizure Update

The APN at Logen's Neuro's office called to check in on "Mr Logen" today. Dr Brunstrom was headed to a conference this afternoon and wanted to see how he was before she left. How amazing is that?!?!
She took down some notes (the latest... well, still not a day w/o a seizure. He's having atleast 1 or 2. Lasting 10 seconds to 45s/1 minutes)
She felt like the next step would be a referral to the Epilepsy Center in St Louis. Our fingers are crossed as we think this would be beneficial to Logen!

A 9-1-1 Call

Today has been interesting. Interesting.
At 8:04am my phone rang- I missed the call b/c I was dropping Parker off at daycare. At 8:05am I was in the car heading towards my school and listening through 14 voice mails to get to the one Logen's school had just left me (if that tells you anything, I don't listen to voice mails very often)
The lady had said Logen is in the nurses office and they've called 911. Please call them.
I freak. 1st thing that comes to mind: Seizure. Bad one. Tears, why couldn't this have happened when he was near me?!
I regain composure and call them back. She said he was on the school bus - and had been seizing for about 2 minutes before he even got to school. I can't remember if they had phoned ahead to warn them or not- whoever was there to take him took off running to the nurse's office. The nurse immediately gave him diastat (a form of valium administered rectally). This stopped the seizure. They called 911 and then me.
I headed towards his school. Thankful I was still in town (well, the next town over- but my school is a good 40 minutes *atleast* from Logen's school). I turned on my flashers and drove like any paniced mother would.
When I got there the paramedics asked if I wanted them to transport Logen or if I wanted to. I said them. He was still lethargic and really not even holding his own head up. There were several people in the nurses office with Logen. The nurse was holding him and his teacher was standing next to them. The assistant principle, office ladies, and 2 paramedics were there 2.
We got in the ambulance and headed to the hospital. Logen's teacher drove my van to the hospital so I would have it there. I really thought he would have slept on that drive, but he didn't. He was so out of it. He would have been so excited if he had known he was riding in the back of an ambulance. The paramedic riding back there had been to the school the week before to show the fire truck off and remembered Logen. He said he loved it!
When we got to the hospital Logen was still not totally with it. The Dr there called and spoke with his Neuro at the CP Center in St Louis. They said we did the right thing and decided to up his medicine again. He's up to 75mg of Zonegran/AM and 100mg/PM. He was checked over and besides the fact that he'd just had a severe seizure, he looked good. So he was discharged.
We got home and he slept til about 1:30 this afternoon. He cried when he woke up, he tried to walk but was so wobbly. He ate a little oatmeal and was starting to get his normal color back.

I spoke with the CP Cntr nurse this afternoon and she said she'd call me back in the AM about this. It's alarming to me that his seizures are getting worse. Today's seizure was classified as tonic-clonic. Logen has never had this kind before. Nor has he ever had one lasting over 2 minutes. I'm worried about this. Personally I think if they are getting worse- there must be something we are missing. How is it that seizures just pop up at 4.5 years old and become worse as you increase the preventative medicine? I'll post an update when I get one.

The nurse called this afternoon to check on us. I also spoke to Logen's teacher (everybody wanted an update) She said when the bus got to the school this afternoon, they ladies had tears in there eyes-- they were so so worried about Logen.

I am absolutely AMAZED with his school. So far, in every aspect they've gotten a A+.

I missed class yesterday- Parker has a bilateral ear infection. One he's had for about a week we didn't know about. We got numbing ear drops- they looked horrible. He hadn't had a fever- just wasn't sleeping. He still doesn't have all of his front teeth in, I chalked it up to teething. Guess we won't do that again.

Say a prayer for us, would you? It's kinda stressful here!

I've Noticed Today-

* I have a hole in my pants- in the butt, where it's sewn together. Thank goodness I have a sweat shirt to toe around my waste!
* The colleges toilet paper is like 1/4 ply. Not kidding, you can read through it!
* There is ALWAYS somebody at the mirror doing makeup or hair. It *almost* makes me feel bad for not fixing mine all the time, almost.
* Parker has 1 pair of pants that fit. And, they are still a little to big. He'll be 2 in a month and 18 months are too big. Go figure~
* Logen's had 2 (possibly 3) seizures already today. Lovely. WTH is up with this?!
* I have alot of studying to get done and shouldn't be blogging. :P

So, I learned that in the age group 18-24 1 in 4 people have a STD. WOW~ So, when I go to the bathroom at school, I'm all creeped out. Like, don't touch anything b/c like only 1 other peron (statistically) in here is 'clean'. Since when did STD's get so bad. I'm oblivious.

Going to class. Say a prayer for Logen today. He's had it rough!