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!!

Saturday, October 27, 2007

Swallow Study Results

Logen's swallow study was yesterday afternoon. He did very well, sitting on my lap of course!

He didn't aspirate honey or nectar thick liquids. He's been on nectar thick since March. When given thin liquids, he did suprisingly well. He only aspirated 1x!! And, believe me- I was in shock, so I made them keep giving him thin liquids. We did it by syringe (3 cc's at a time), by spoon, by regular cup (didn't go so well), and by his special sippy. The time he aspirated, it was with his sippy. And, of course- it was silent aspiration. When he drinks from his cup- he throws his head back & just guzzles it.

His swallow is delayed (nothing new), he usually clears his airway in 2-3 seconds- taking about 2 swallows.

For now, Logen is still on nectar thick b/c he is at such an increased risk for aspiration. During therapy sessions, we can use a syringe & give him thin liquids. We really have to work on strengthing his jaw, and getting his tongue to curl when drinking. When you take a drink, your tongue's sides curl up- this helps get the liquid pushed into the back of the mouth and ready to be swallowed. This is what we really need from Logen. In the study, he swallowed peaches whole- he doesn't have the control/skills to beable to get the food into his checks to chew it. His tongue is just 'there'. We are really going to be hitting mouth stretches HARD!!! And, we must work on his throwing his head back. He does this b/c it's just easier to let the food fall into his throat rather than him have to do any work to get it back there.

Overall, I was impressed and shocked that he only aspirated 1x. Yay Logen :) We will do a repeat study in 6 months, unless we think there is a change and need to do one sooner. I'm going to be praying hard that in 6 months my little man will no longer need thickener!!! And, of course - that his coordination improves!!!! He really really really needs some cordination in his mouth!!!!

Wednesday, October 24, 2007

My heart is hurting....

I walked out of Logen's therapy feeling like my chest weighed 100,000lbs. Besides being so upset (emotionally) about the regression in my baby- I learns something else. Logen's SLP and I were talking about some concerns. She said that she's not sure that Logen is processing stuff. Stuff= for lack of a better word. Example; when we ask Logen to do something- sometimes he follows directions w/o visual cues, and sometimes he just stares at you blankly. We know he hears us. My heart hurts 1) b/c CP is not degenerative. So, does my baby have CP or not? 2) I've never said this before- but, is my baby 'all there'-- and here come the tears. I don't know what to do. I hate this. Absolutely hate this. It's not fair. I want to lay in the floor and cry, like a baby. Worse than a baby, like a mommy who's lost something. My child is is still here, so why does it hurt so badly?

I'm begging you for prayers at this point. For me, for Logen, for our family, for strength.....

Our SLP is going to write a list of concerns for me to relay to the Neuro when I call them Friday after the SS. I will post the list here as well as what the APN says.


Last Friday I called the Neuro's office to ask about the possible regression in regards to feeding, swallowing, chewing, etc. The APN called me back rather quickly. She said to wait and see what the swallow study revealed. I am suppose to call her back after the study on Friday. She said more than likely, Logen will undergo more testing. Please say a prayer for Logen. Pray that it was just the vital stim that made things worse and now that we have stopped it, he'll get better.

Thanks blog family.

Swallow Study...

...has been scheduled for this Friday, October 26th at 3pm. I'll let ya know what we find out!!

Wednesday, October 17, 2007

Pumpkin Patch Pictures

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Discontinueing Vital Stim

I've been considering stopping Vital Stim for hte last month. Monday was just about the last straw. We went in and Logen screamed for about the entire hour. It was misrible. I talked to his other SLP and the OT yesterday to see what they thought about stopping the VS. They both agreed to wait until we have another swallow study (working on scheduling it). However, we have seen NO change in the last several months. The only thing that changed for the better is his tongue. It is now able to come into a neutral position. This happened after 1-2 months of VS. We are now working on 7 months of VS.
Things that have changed- and not for the better.
1) Logen has increased the amount of drooling
2) He was able to drink from his special sippy as well as a Nuby cup. He had a little spillage from the nuby, but was constantly improving. Now, Logen has a hard time sucking from the Nuby. He went 12 hours and had maybe 4oz one day last week b/c I only offered him the Nuby. I don't know if it's b/c it's suddenly harder for him or if he was just being stubborn.
3) So, his sucking has 'regressed'.
4) Eating altogether has gotten worse.
5) I know he's still aspirating.

His therapists said that they feel language is more important at this point. I feel that he's regressed back to before we started VS. I was so excited to start this therapy- we knew it was experimental in ped's, but were willing to give it a shot. Now, I'm kinda mad at myself for trying it. Logen was doing awesome in the eating dept. He'd gone from honey thick to nectar before VS. I'll let ya know when we do the next swallow study.

Interesting Article

Christie posted this article on the CP board and I wanted to share it here. Makes me glad that Logen is a male and we won't have to deal with menstration! I'm not really sure what I think about this. While, at first I was disguisted I started thinking about it. A child this severe will likely never have children of her own, yet that doesn't give anybody the right to take away her "parts". Then again, menstration and all of the wonderful things that come with it are frustrating- and can be scary for her. Then, there is the entire hygiene part. Wow! So much to think about!

A severely disabled teenager’s womb may be removed to improve her quality of life, and not because it is medically necessary, in what is thought to be a British first which has reignited debate over medical ethics.
Disabled charities yesterday condemned the plan while experts in the field cautioned against proceeding with such radical surgery before all other options were exhausted.
Doctors are seeking legal approval to perform a hysterectomy on Katie Thorpe, 15, in a radical solution to her mother’s fears that the girl, who has cerebral palsy, will not be able to cope with the onset of adulthood.
Alison Thorpe wants the operation to go ahead at St John’s hospital in Chelmsford to protect Katie from the “pain, discomfort and indignity” of menstruation.
Legal guidance is being sought because Katie, who cannot walk or talk and is believed to understand little of what is said to her, is unable to give consent.
News of the procedure sparked controversy yesterday, with charities denouncing the surgery, describing it as a “breach of human rights”.
Simone Aspis, of the United Kingdom’s Disabled People’s Council, said the operation was “unacceptable” when Katie could avoid menstruation through alternatives such as the Pill.
“Katie, like any other nondisabled teenager, has the right to grow up with her body intact, and where she can have the same choice as anyone else to give birth to her own children.”
She added: “We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”
Gary Birkenhead, head of the programme development unit at Scope, the disability charity, said that while it was tough to bring up a disabled child, “that is not a reason to have to go to these lengths”.
However, Paul Hardiman, a consultant gynaecologist at the Royal Free and University College London, said the matter was not black and white. “I think you have to balance the protection of her human rights against the distress she is going to suffer if something isn’t done,” he said.
But he added that a hysterectomy was a radical and irreversible procedure that should only be considered as a last resort because less invasive options were available.
Faced with a patient in similar circumstances this year, Dr Hardiman recommended a device that releases hormones when it is inserted into the womb, slowing down or stopping menstruation. “It is as effective as sterilisation. but a key issue is that it is also reversible. A hysterectomy seems such a major and final thing to do to somebody.”
Doctors initially suggested contraceptive pills and injections to stop Katie’s periods starting but Ms Thorpe ruled them out because of the risk of her wheelchair-bound daughter suffering from thrombosis.
She said the decision to go ahead with surgery was an agonising one, but she believed it was the right one.
She told The Sunday Times: “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.
“Katie would be totally confused by menstruation. She could not manage it by herself. She could not keep it discreet; she cannot be private.”
The case echoes that of an American child known as Ashley X, who underwent surgery and hormone treatment to keep her at the size of a six-year-old child because her parents believed it would make her life more comfortable. When her case was made public in January, her parents’ argument that “keeping her small” would improve her quality of life was criticised by advocates for the disabled.
Ms Thorpe, who looks after Katie around the clock, said that her critics should “come and spend a week with me, walk in my shoes”. She said: “I’ve spent 15 years with my daughter. As a mother who loves her dearly, I am trying to do the best I can for her. I believe this is right for my daughter. It might not be the right thing for other children with cerebral palsy, and I’m not advocating that every disabled girl should have a hysterectomy, but the choice should be there.”

Monday, October 15, 2007


I've been sick to my tummy all weekend trying to decide whether or not to go to the playgroup's meetup at a gymnastics center. I posted on the meetup board my concerns & fears about my son just to see what they'd say. I had like 12 responses within 12 hours of my initial post. All of the ladies were so kind and said that differences don't matter--- yada yada yada. So, at 8am I decided we'd go. If we didn't like it, we could leave. On our way this morning, my tummy was in knots- kinda like the first day of school jitters. I got lost and ended up being about 20 minutes late. We walked in and I felt a bit uneasy at first. Within 10 minutes, atleast 3 moms came to me and introduced themselves and their kids. Logen was running around like crazy and Parker was stealing a toy from another baby. By the end of the meetup, I felt like the ladies (and a daddy) were genuine. It was a pleasant experience-- much to my suprise!!!! I think we will try this again! Tomorrow afternoon there is another meetup at an ice cream parlor.

I learned something today--- don't let my fears hold my children back!! LOL

BTW: This was our first playgroup since Logen has been Dx'd. And, we lived through it w/o TEARS! Big stuff there!!!!!!

Sunday, October 14, 2007

The Little Mechanic

My tire low light came on Wednesday night, so Adam checked the pressure and adjusted it. Logen watched the entire time. On our way out the door Thursday, Logen grabbed the tire gage and set out to check Mom's tires! How smart is that?!?!?!

Oh, GRAVY! What a mess!

I went to the bath room, walked into the living room, noticed it was rather quite, walked into the kitchen- this is what I saw:

Parker; eating gravy mix. I think he enjoyed it. BTW: I made REAL gravy Saturday morning for the FIRST time and it was edible!!!! Adam loved it :) I can now make homeaide gravy like my grandma.... YAY for me :)

Tidbits from the trip

Ok blog family-- this is LONG overdue!!

Here are some juicy details of our trip!

Flight there was great! Logen got to meet the pilot and hang out in the cockpit for about 25 minutes. He LOVED it!
The first night we took the boys to the ocean, they both freaked! We went back Friday morning and they LOVED it. No waves though. Didn't realize Corpus was in a bay (Duh!)
We went to the Texas State Aquarium in Corpus- it was great! There was a fish that kept scaring Parker. That was priceless. In the "Corpus Picture" post you can see the fish I am talking about. It's the one where we are sitting infront of a HUGE tank. I swear the fish was swimming touching the glass for our benefit. Every time it got in front of Parker, he'd crawl away- quickly!!! Only this one particular fish bothered Parker!
We went out to the van Friday, getting ready to meet our family in Victoria, TX and the rental had a flat! So, we took it back to the airport. They didn't have another van to fit 4 adults, 2 cars seats, a double stroller, and a bunch of luggage. So, we had to wait for them to get another one from their other location. That was fun.
Friday night was great!! Adam got to meet 2 Aunt-in-laws (that sounds strange!) and an uncle-in-law as well as their families. It was my first time to meet their spouses and children. In my opinion, it was a great reunion. I am thrilled that we have been reunited.
Saturday we ate at a neat little cafe (The Rosebud Cafe) in downtown Victoria- the burgers and shakes were wonderful! We also got to tour "Diamond Fiberglass" where my Uncle Don is the President. I had no idea what making fiberglass, um, large containers entaled. Guess I didn't catch the name of what the big things they make were.... It was pretty neat!
That evening, Uncle Don & Aunt Susannah took eveybody out to dinner at Greek Brothers! Also a wonderful meal! My birthday was Oct 3 and Aunt Megan's was Oct 7, so they suprized us with a cake and singing!
Sunday we relaxed and packed until time to head back to Corpus to catch our 5 pm flight. Somehow we got turned around and headed North. Noticed it when we saw a sign for El Campo. Which is about 68 miles from Houston. So, we missed that flight. When we called the airlines they said we'd have to purchase another ticket to beable to fly out of Houston. Which didn't make any sense since our flight from Corpus landed in Houston then had a 2 hour layover before heading to Tulsa. It was going to cost around 916 bucks for new tickets. We decided we'd just show up at the airport like we knew what we were doing. We signed in using the computers and viola- were able to get boarding passes for no extra cash! Our flight kept getting delayed due to bad weather. We didn't end up leaving Houston until 9:30ish. We sat in the airport from 4:15 to 9:30. That was interesting. Logen was none-to-thrilled that other people were boarding planes. He tried to board 2 seperate flights. We walked around for a bit, Logen found a security guy and tried to hold his hand. The man was very nice. He told Logen that he couldn't hold his hand. He said, "if you lost your mommy, then I could hold your hand." Logen had a "so" look on his face and walked off. He was absolutely thrilled to finally be back on the airplane. Maybe be will be a pilot "when he grows up"!!!
We made it home around 2 am. We all slept until about noon Monday (the 8th)- slept through Vital Stim! Thank goodness Lori was understanding!!

Wednesday, October 10, 2007

Tuesday, October 9, 2007

Monday, October 1, 2007

No HOT Water

You read that right, we have NO hot water today! Yesterday, my handy man hubby had to fix a leak under the kitchen sink. (Our house was built in 99, how insane for it to be leaky already!) That meant, he had to turn off the water. I guess whenever he turned it off, the pilot light automatically went out. We had hot showers last night, so what was left in the tank must have been all that was left. Hmmm..... so, I get to go to therapy w/o a shower- I'm going to smell great today :)

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