The Real Deal

I now can access my email from my phone, so I haven't been on my actual computer that much. And, last week was one of my colleges Springs Breaks. This week is Logens and my other schools. Which means, I didn't get a break this year! Agggg
I spent much of last week working on my paper for Microbiology. I have 3 short papers due next week and some Psych stuff.

It's almost bathing suit season and I've been searching for one. I have never had much self-confidence and always thought poorly of myself. Trying on bathing suits has made this worse. I've gone through my days struggling with my "Earthly body". So, thats kinda where I've been at on all posts besides Logen updates. It's something i've struggled with for many years- I'm working on it. My hubby says other people on't see me the way I do. I wish for one day I could see what others do!!!!

10% off at Lowe's

You fill out a brief form (name, address, email) and they send you a 10% off coupon. The deal is, it's for people that are "moving". You can also find this coupon at your local post office near the change of address request forms.
It has a unique barcode, so you can only use it once and the max discount is 500.00!
Click HERE

$10 off at Bath & Body Works (FREE possibility)

Here's a coupon for $10.00 off ANY Patricia Wexler MD Dermatology Product from Bath and Body Works. In store only. EXPIRES April 5, 2009. With this coupon you can find something for FREE! (I went in a bought a 10.00 item with mine- so it was FREE)

Click HERE

FREE Johnson & Johnson Little Green Bath Buddy Bar

Here's a coupon for 2.00 off 2 of the little green bath bar buddies. At Wal-Mart they are 0.97 and at Target they are 0.99 - so this coupon makes them FREE either way you go!!!

Click HERE to print.

EXPIRES April 1, 2009.

FREE Weber Grill Spatula!

There are only 7,000 of these available! Hurry and sign up NOW!!!!

Click HERE

Parker Finally Says I LOVE YOU!

It's 2 seconds long, Watch It! My lil man would not say this for the longest time. He's only been doing it for the past week! We'd say I love you and he'd say yes (or no). I am so happy he says it now! And, it's SOOOO cute!

Sorry! More Logen Test Results

For the blog neglect. Last week was crazy. I was up from 6am Wednesday to 11pm Thursday. I had a test Thursday and I guess once I stay up for a while, my body forgets how to shut off. I also wrote 7 labs reports (was originally 6, but one snuck up on me!) Wednesday.

Logen's 'issues' last week were crazy. Today he's had a hard time walking. He's falling all over the place. He had a few days where he couldn't keep his drink in his mouth (he's on a soft nipple nuby cup, and he's been doing this since he was 3- he was never able to drink from a bottle b/c of poor suck). Saturday in OT, his OT said his facial muscles were very tight- something strange, they've not been that tight in a long time.

We kinesotaped Logen's mouth for 'trial' Tuesday. He held drool is for about 10 minutes (max). His SLP said as long as he does that, we will continue to try it. It peels off very quickly once he begins drooling, so it's not something that we will keep on. I will learn to do this once we perfect the method and placement of tape so that I can tape for feeding. This all depends on if it continues to work of course.

Logen has several appts coming up. We head to St Louis in the next 2 weeks for the Epilepsy Doc and Neuro. Then we head south to our Children's Hosp for Genetics and Endocrinology.

Logen had a bone scan done to determine to the age of his bones. At the time of the testing Logen was 5 years 3.5 months. His approximate bone age was 5 years. The conclusion was normal, but will be addressed at the Endocrine appt. Same with the fact that he's still wearing 4T and has been since Spring 2006. People are beginning to tell us he's getting skinny.

WHY? A lady followed me out of Wal-Mart last night to ask how old my son was, pointing to Logen. I told her 5. She said, oh. Turned and walked back in. Why do people do this? B/c he was walking funny? B/c he drools? I told girlfriend who told me I sould have gone back in and asked why she cared. I told her it didn't matter. That lady was actually nice, many of you know the rude and cruel comments you get.

Parker is doing well with 'no biting'. Tabasco only 4x since Febuary 15!

My Dad & Liz celebrated their 22nd Anniversary yesterday! My littlest Sis turns 14 today and Liz's birthday is tomorrow.

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!

Logen

Logen's got infantigo! His seizures are on the rise. Neuro had us give Klonopin on Friday b/c of a weird 2 hr funk/possible seizure that happened on Thursday night. They won't increase the Keppra again b/c it's causing Logen to walk into walls and fall all over himself. This is a side effect of the drug. I wish they would just pull him off of it!!!!! His attitude/behavior has been 'not-so-great'. Also a side effect.
He's on an antibio for the Infantigo and doing well. His face has cleared up alot. The Dr said after 48 hours on the med he wouldn't be contagious, phew! It'd pass on as strep and nobody has a sore throat (yet) so I guess we are in the clear thus far.
I have sent off for the records to go from one Children's Hosp to the other. Once St Louis gets them, they will review and see whats next. We have already been told the next step needs to be a spinal tap. I just don't think we are ready to subject Logen to that.
Pray for Logen!