Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks! Pray for Logen

A sincere THANK YOU to all of you who have added this to your blog! And, to Anelys for creating such a cute blinkie!!

Sunday, January 11, 2009

Geneticist Appt

LOGEN DOES NOT HAVE ANGELMANS!!!!!!!!!!!!!!! Or CP (confirmed by yet another Doctor)

The newest Dr on our 'list', the Geneticist. We really liked him. He was straight forward. We have never had a Dr say that all of Logen's 'weird/abnormal' th ings must be related. Thank you Lord. How do you have a child that is non-verbal, developmentally delayed, begins seizures at 4.5years, and has a lipoblastoma- and some how these things just happen to the same child? No... the lipoblastoma in itself is very rare. We've ruled out Angelmans. We've ruled out CP. The Microarray came back normal. The next round of testing is below. Let me tell you, I tried to research the groups of disorders. There wasn't much info out there. The results will be back in 6-7 weeks. Until then, we just pray.

Prayer warriors- Lets Get Our Prayer On!!!
Testing: Round: Momma's lost count...
1) PTEN Hamartoma Tumor syndrome (PHTS) is a group of disorders caused by alterations in the PTEN gene. This group includes:
Cowden syndrome (CS)
Bannayan-Riley-Ruvalcaba syndrome (BRRS)
Proteus syndrome (PS)
Proteus-like syndrome

2) Aristaless related homeobox, also known as ARX. This can be broken down into sub categories, with rare syndromes, etc- theres not a whole lot of info out there on this (that I was able to find). Partington Syndrome is one name I found.

3) RETT

Friday, January 9, 2009

Surgery Went Well!

We are finally out of the hospital :) Logen did BEAUTIFULLY! Glory to God! Thank you to all of our Prayer Warriors!
We got there around 5:30am. He was wheeled to the OR at 8 and surgery started at 8:30 (they ended up intibating, so prep took a little longer). He was done and in recovery by 9:20. We were called into a consult room (which freaked me out b/c the other Dr's had just gone into the waiting room to speak to familes) and told he went through with flying colors :) He doesn't expect the pathologists to find anything 'bad' and all of the tumor was on top of the muscle- great news! Relief!
We weren't able to see him until nearly 10 and he was in alot of pain when we got back there (his little cry was aweful! He was very ticked at the IV as well) They gave him some Morphine and my little man was out!
He did get sick a few times, but a little Zofran fixed him right up. He ate a popsicle and perked up a little.
He had to finish 2 bags of IV fluids before he could be discharged as well as prove he could keep down clear liquids.
He is very mellow chilling on Daddy's lap watching cartoons right now. He's got an excuse for another 3-5 days out of school. And he can't shower (sponge bathe only!) for a full week! -It's a little boys dream!!! haha If he could say, "Bring on the mud" I'd bet anybody money he would!

** I have info about the other appts- I will hopefully beable to post on that tonight. We still need prayers!

Wednesday, January 7, 2009

Surgery Scheduled For Friday

This was a totally unexpected occurrence! However, the "Lipoblastoma" on Logen's leg will be removed Friday morning (We need to be at the hospital at 5:30am). We saw a Pediatric Surgeon this morning to discuss what to do with this spot- he wanted it removed. The scheduling lady came in and put us down for the 1st case Friday. We can do it as an outpatient procedure as long as Logen does ok with the general anesthesia and doesn't have any seizure issues.

The Dr is going to use 'inside' sutures and some sort of pain pump inside the site.

I will pictures of this (before and after)-- I did not bring the USB cord to connect the computer and my camera.

We are trying to figure out what we are going to do with Mr Parker! It gets a little tricky when you are so far from home.


There was article in the Journal of Surgical Oncology by one of the Dr's where Logen will have his surgery. I didn't pay for the article, so this is what I was able to read- I thought the stats where interesting.

Lipoblastoma is a rare benign neoplasm of fetal-embryonal fat tissue with a 14% tendency to recur. It occurs almost exclusively in infants and children. To my knowledge, less than 100 cases, including children and adults, have been reported in the English literature. Two retroperitoneal and one case of mesenteric lipoblastoma, all presenting as a large palpable abdominal mass, are described. Our patients, aged 12 years, 7 months, and 11 months, were treated by total surgical excision of the tumors. They are alive and well 5, 4, and 3 years postoperative, respectively, with no evidence of recurrence and no indication for any adjunctive therapy. Pathologic evaluation was decisive for the best treatment and prognosis.

Diagnosis: Lipoblastoma (linked to the article)
Discussion: Lipoblastoma is a rare tumor believed to arise from embryonic white fat and typically seen before 3 years of age. Though histologically benign, it is locally invasive, implying a high risk of relapse if incompletely removed. Despite its low incidence, the diagnosis of lipoblastoma must be considered in children with mass in soft tissue, mainly if they are younger than one year. Two forms of this lesion have been described: a well circumscribed, encapsulated type occurring superficially (lipoblastoma), and a diffuse, infiltrating type occurring in deep soft tissues (lipoblastomatosis). Most lipoblastomas are found in the extremities and trunk, although retroperitoneal, mesenteric, mediastinal, and head and neck locations have been reported. Despite their potential rapid growth and local invasion, these tumors have an excellent prognosis, especially if resected completely. The histopathological picture bears a striking similarity to myxoid liposarcoma, and at times may be indistinguishable. Recent studies describe rearrangements of chromosome 8 q11-q13 regions as a new discriminative marker that distinguishes lipoblastoma and lipoblastomatosis from myxoid liposarcoma. Ultrasound and MRI are the best imaging modalities to diagnose lipoblastoma by revealing structures and local growth pattern that appear specific for this rare tumor. The imaging characteristics of the lipoblastoma also need to be correlated with the age of patients to exclude other entities. The treatment of choice is surgical resection. Following complete excision, the prognosis is excellent, though recent reports indicate a recurrence rate of up to 25%, particularly for infiltrating tumors. Metastases have not been reported in this tumor, although local invasion is possible.

Monday, January 5, 2009

Fears & Funnies

On Jan 31, 05 Logen was given the Dx of CP at the hospital we are going to tomorrow. I thought long and hard about this today. That Dx followed us around for 3 years and 10ish months. (And, in most everybody's documents hasn't changed.) You get used to something and *think* you accept it, then it's 'gone'. The concept is something that I don't understand... but maybe that's part of our makers plan. Who really knows. I have this little voice that keeps saying, 'it's going to be ok. Maybe it's going to be a 'better' Dx.' Then, it's like a sudden crash- 'Jessica, he doesn't speak at age 5. Somethings not right. He started having seizures at age 4. It cannot be 'better'.' Agg... there's my pessimism kicking in. It gets me. Every time.

I guess my overall thought was... 4 years ago we got a dx I did not want. I cried like no other the entire trip home. I cried until I had no tears left to cry. We go to that same building tomorrow. It's the same month, the same time of year. Am I going to leave there with a Dx for Logen? Will we continue to test or wait? What happens next? What about Logen? What does Logen think about all of this? Is he sick of the testing and sitting in Drs office? Of people talking about him in front of him like he's not there (I think this is rude. I wish Drs would not do this!) Or being poked and prodded like a pin cushion? Or does he even know whats going on?

On a lighter note: Some Parker Funnies & Sicklies! (Mmm... not a word, 'eh?)
* Parker has officially started calling a Bus and Bus. It was a Butt. I liked Butt. It was funny...
* And, he ate bloodworms today. Yum. Not. They were being thawed in the sink for the fish. Parker decided to have a taste. He ate the whole container.
* He also informed me this morning that his ears hurt and he needed to go to the Dr. So, mean mom said- what if they give you a shot? You still wana go? He said, "Es. Ear ur." (We know, he needs speech. And, he qualifies. However, our insurance company doesn't agree) My 2 y/o diagnosed himself! Both ears are indeed infected. Suprax for 10 days. He's also on Pulmicort and Xopinex {breathing treatments, he does great with these... HAHAHAHA}. (P for the remainder of the winter... nothing new, we've done this for the last 2 years and X until the Antibio is finished)

Upcoming Appointments

We will embark on an appointment filled journey in the early hours of the morning! Roads heading south have a chance of ice, so I will be up early checking road conditions before we head out. I will update when I get a chance (hopefully daily!) Please say prayers for us! I am praying the next 4 days bring a lot of information and not to many tears.

Sunday, January 4, 2009

Santa's Cookies

Click Image To Enlarge
Parker was more fascinated with the "cookie" part of Christmas than gifts. He woke up Christmas morning, glanced at the tree with it's toys from Santa, walked past it and into the kitchen. He noticed the cookies were missing and very concerned said, "Santa's Ookie Ooone!"

I ended up ordering the Easie Eaters. I found them here for cheap. (I searched several sites to find the lowest price) And shipping was only 5.00!

Anelys posted a comment about Myself Belts. Logen's nickname is Mr Fashion- so when I searched this (also at Adaptive Child, but a wider selection available at MB) I thought it was a great idea for him. And, an awesome OT workout! We will have to order this for him. I think he will LOVE it and with minimal (to no) help he can do it all by himself!! (Which, is a great self esteem boost!)

Curved Utensils

I am searching for the 'perfect' set of utensils for Logen. We've tried the weighted fork/spoon- but I think he needs something with an angle. The children's sets I have found are all plastic which concerns me b/c Logen prefers to eat with a metal fork at home. He will actually go to the silverware drawer and get a metal fork if we give him a plastic one. We want him to be successful at eating on his own, so finding silverware he can use is very important.
Has anybody used these? What did you think about them? Are there any out there that you suggest?


EasieEaters™ Curved Utensils

Another Mess!

Parker opens containers with his teeth now. When the little guys work together, we get big 'ole fun messes!



Friday, January 2, 2009

Wednesday's CT

WAS A TERRIBLE EXPERIENCE! I arrived early, the test was ordered wrong- the the right diagnosis. Thankfully, the CT lady caught it so she called the Dr to have it fixed. However, inorder to do the contrast with a 'possible tumor in the kidney/adrenal gland' region- you must have labs done to make sure your kidneys functions are normal. This lab tech sucked. I have never in my life had a vein get rock hard, swell up and hurt so badly for over 24 hours afterwards!! I took a pic w/ my phone Wed night after it was still puffy. I wish I would have thought to do it after it happened b/c it was ugly!

Then when they finally got me back to do the contrast IV, they put it in wrong- man, did it BURN! I was in tears. It's not like they use a small gauage either (and my arms aren't that big) One lady was saying, it doesn't hurt- put it behind you head... The other lady said, she's in tears- I think it hurts. It took about 40 minutes and was over. I was so happy. I started taking the IV out myself and got in trouble :P Friggin' hurt and I was done with it! I'm a horrible patient.

No word yet. *Hopefully* soon...

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