Wednesday, October 15, 2008

Alo - PT Eval (LONG)

Alo had a PT eval done on the 8th of September, 2008. I got the report in the mail today.. I expected pretty much everything that it said, but I did not expect to see a few things.

Here it is the Bold parts are the different sections of the eval. The quotes are direct quotes and the rest are my comments.

History, Birth History, Medical History - A bunch of stuff here... not really relevant besides him being preemie, hospitalized numerous times and having spina bifida.

Then it goes on to state Social History... Where he lives, his nursing (or lack thereof) and some concerns and needs for him..

Standardized Testing
It explains the type of testing they used to evalutate him. (Peabody Developmental Motor Scales and the Pediatric Evaluation of Disability Inventory)

According to the PDMS He is in the 1 percentile.. I guess the good news about that is that 1% of kids his age are right there along with him.. The bad news of course is that 99% are more skilled than him. Below are the categories and raw scores for PDMS.

Reflexes - 23
Balance - 11
Nonlocomotor - 52
Locomotor - 11
Rec. and Prop. - 0

And the Basal Age Level - 6-7 months
Ceiling Age Level - 10-11 months
Age Equivalence - 7 months
Percent Delay - 82% (Hey, at least he is 18% non-delayed)

Now for the PEDI scores:

Functional skills - 15 - < 10 - NA - 37.1 - 2.4
Caregiver Assistance - 15 - 20.8 - 3.5 - 49.8 - 3.8

Clinical Findings/Observations:

Now for the fun stuff...

Range of Motion

"Aloshua demostrates deficits in PROM in his lower extremities, particularly knee extension and ankle dorsiflexion"

Why yes he does.... He holds his legs very tight.. He has very poor muscle or shall I say lack of muscle along the back of his legs making it very difficult (and painful) for him to straighten his legs out.. Due to nerve damage he is unable to point his ankles. He can flex his feet up but can not point his toes down.

"He also demonstrates decreased trunk and cervical ROM with all movements"

I'm not sure I would go that far, but I guess that is why they are the experts.


"Aloshua exhibits general decreased strength throughout his trunk, neck and extremities. He is able to perform anti-gravity movements in supine for hip and knee flexion bilaterally (with left increased over right).."

While hs isnt all that strong, he has great strength in his arms and he can kick the crap out of somebody by swinging his legs up. His arms are obviously much stronger than his legs. His neck is extremely strong considering the size of his head. The right side of his lower body was affected more from his spina bifida..

"He is able to maintain his head and trunk upright and in midline while W-sitting for several minutes"

Yeah.. That is the only way he sits. He is a pro at it.

"Formal manual muscle testing was not performed due to Aloshua's young age and inability to tolerate appropriate positioning"

Muscle Tone/Spasticity

"Aloshua demonstrates low muscle tone (hypotonia) through his trunk, neck and extremities. No resistance to rapid movement at major joints or clonus was noted at the time of this evaluation."

Again, Im surprised they say he is weak in the neck... I couldnt imagine them carrying around a head like his and having low tone...


"Typical Posture: When lying on his back, Aloshua tends to keep both hips abducted and externally rotated, and both arms abducted to each side."

Very common with preemies, though most outgrow it.. I believe this to be due to many reasons.. One being he just prefers it because it feels better.

"Other Observations: In supine, Aloshua is able to turn his head freely to either side."

A feat he reached around 15 months!

"He is also able to bring both arms/hands midline to reach a toy, and is able to cross midline with either arm/hand to reach a toy"

Another that he learned around 18-20 months. He is really good if its food he is reaching for ;)

"He is able to flex both hips and knees through partial range; however his right leg tends to pull into abduction toward the end of his available active range of motion 9AROM)."

Again.. a spina bifida thing for him


"Typical Posture: When lying on his stomach, Aloshua tends to keep both hips abducted and externally roated, and both arms abducted and slightly retracted."

Again, same reason as above.. Also I believe part of the reason for this (especially on his stomach) is that his trunk is very wide due to a few different things. His extremities are small and it is harder for him to keep his arms under himself as he should.

"He is able to turn his head left and right but tires before fully orienting."

Again... A head issue here. Its just too dang heavy to lift! All of his doctors and specialists think that once his head is more proportionate to his body that he will be able to do many more things. Right now he is just very top heavy.

"Aloshua tends to spend minimal time on his stomach, as he prefers W-sitting."

Cant argue there... He can see the world and come as close to standing as he can by W-sitting.. The therapist hates it.. but its the only way he can sit up.

prone > R > supine: independently
prone > L > supine: independently"

He is pretty good at rolling. This was how he got around for many months before he figured out the crawling business.

"Transitions Floor > Sit: Aloshua requires assistance to transition to sitting as he prefers to W-sit. He maintains unsupported sitting less than one minute"

Well if they arent considering W-sitting to be "unsupported sitting" then yes, he can not sit up on his own. W-sitting is the only way he can sit up.. It gives him a wider bottom to sit on.. If he sits with his legs out in front of him we run into that head issue again. (He is like an upside down weeble.. as soon as you let it go, it tips back over)

Moves us right along to Sitting

"Typical Posture: Aloshua prefers W-sitting and is able to maintain this position independently while playing with toys and exploring his environment. He is not able to transition independently into tall kneeling from W-sitting or quadruped."

Well Im not so sure about that... While he can not tall kneel as tall as they want him to I do believe that he can transition into quadruped (of course he is froggied, but at least its quadruped)

"He currently requires assistance to transition to sitting with his legs and feet in front of him"

And if he is let go then he topples over. Sitting like this is uncomfortable for him. His legs are very tight in the back and this forces him to stretch them much more than he is comfortable with. And yet again, the head issue

"He was able to tolerate unsupported sitting for 30-45 seconds before tiring and supported sitting up to 5 minutes during testing before tiring"

He tires very easily with everything.. Mostly due to lung/airway issues.. Its the reason he is so small.

"He was able to maintain his head upright and in midline well during supported sitting He was able to track to either side, but would lose his balance with any attempts to look behind his shoulder"

At least he got part of it right...

"Transitions up from Sitting: Aloshua transitions from sitting to W-sitting or quadruped in order to creep"

Ok.. Creep, different from crawling, though I would call what he does crawling. So.. this means he DOES get into quadruped..

"He is not ambulatory nor does he attempt to pull to stand at surfaces without facilitation"

First off, he IS ambulatory.. He doesnt walk; true, but he crawls (or creep as they say) and by gosh he gets to where he needs to go... He is not ambulatory outside. Regarding the pulling to stand; I wouldnt say he did it with facilitation either.. He bears no weight and has no interest in it.

Orthotics/Adaptive Equipment/Assistice Devices

"Aloshua currently utilizes a tumbleforms feeder seat that was donated to him for supported upright sitting time."

He received this chair after much hassle with medicaid when he was younger so he could sit up. He had other chairs but they positioned him funny and he was unable to breathe. This was pre-trach.

"He has a standing frame, but has not used it."

Well, it is being used as a makeshift end table!! He does not like to use the stander.. It is uncomfortable with him, but hopefully as PT works with him more he will be able to tolerate it.

"Aloshua's mother reports he "stands" in a baby walker to eat, but requires assistance to propel the walker in order to explore his environment."

I wouldnt really say he explores his environment, but I guess we all chose different words... While sitting in his baby walker (we call it his "chair") he will attempt to put some weight onto his feet and push himself backwards while doing so. He is unable to move himself forwards.

"His mother utilizes a standard double stroller for outing to transport Aloshua and his respiratory equipment, and he uses a standard card seat for transportation"

This eval was done before he got the wheelchair but it would be nice if that fancy wheelchair we just got could be used now instead of the stroller!! The stroller is big and bulky and when loaded down with his stuff makes it very hard to get to things (like his vent if its beeping).. Re the carseat, his is currently in a Scenera which is FF or RF dependig on who is driving the car. I prefer to keep him RF for safety but thats not possible if Courtney (the Giant) is driving.

"Aloshua's mother has been given a prescription for bilateral AFO's through the spina bifida clinic at ACH; however, he had not been evaluated at Snell at the time of this evaluation."

PT will be working with Snell (the orthotic place) to get him the AFO's.. They want him to use the AFO's for weight baring activities (like the stander).

"- loving and devoted network of family and caregivers
- very playful personality and enjoys interacting with others
- able to creep reciprocally to explore environment"

Sometimes he is a little TOO playful and doesnt want to do his work. He would rather play.. For many months during Speech Therapy he would only play peek-a-boo instead of doing his work.. Cute, but not what they want of him :) I still find it crappy that they say "creep" instead of crawl!! Does this mean we need to work on crawling still??


"- hypotonia
- decreased strength
- decreased AROM
- dependence for transfers
- delayed mobility skills"

I think he quite likes to be carried around.. Like today the little bugger wanted me to carry him ALL.DAY.LONG! .... And he has great strength.. Just piss him off or try to suction him when he is mad.. He will demonstrate it then.

Lastly it says the Informed Clinical Opinion and Recommendations which basically say that Alo is delayed and needs therapy and the therapist thinks that Alo would benefit from therapy.

And the Physical Therapy Goals

Im not going to list them all but pretty much things to try and get him to a 10-11 month level... Bearing weight on his feet, sitting, quadrupred, tolerating activities, and lifting his head more while prone

Friday, October 10, 2008

Wheelchair pics + other pics..

Somebody was wondering why they could not just add a vent tray to this wheelchair.. Long story short..When they ordered the wheelchair they "forgot" that he was vent dependant and needed a vent tray.. Because they did not think about this (even though it was in his dang chart) they ordered the smallest chair they had. The chair they ordered for him is not big enough to hold a vent tray. The vent would make it tip over (Because the vent is heavy as heck). Once Alo outgrows this chair he can get another one with a vent tray but chances are he wont need it then. He needs it NOW and that was the whole point of getting the dang chair!!!

Anyway, we cruised around the compound earlier and crossed the street to a little trail. Alo loved it. He was just smiling the entire time.

Then later this evening Kaia came home, put his Power Rangers costume on and we went outside to play. I took the little kids out with me, Alo in his chair, and we went on another walk. Its such a big difference pushing this than the stroller. With the stroller it took a lot of effort for it to start moving forward.. This chair you barely have to push and it starts moving.

Alas, here are pics of the first walk.. They didnt turn out too great.

Going for a walk outside:


And again: (He was looking at the elevator because the door opened)


And inside:


And I dug these pants out of some stuff that was put up. They are a size 12 months but fit Alo perfect. His pants that fit in the legs are too small in the butt and the ones that fit in the butt are too long in the legs. I was surprised that these fit him in the butt and legs.


About that wheelchair...

Here in Arkansas kids have to be 2 years old in order to qualify on Medicaid for a wheelchair.. It doesnt matter what conditions they have or what medical equipment they have, they must be 2 years old.. We knew this so we started filling out the information in Dec of 2006 knowing that it would be a few months for them to do everything. Alo wouldnt turn 2 until May of 2007 but by having the paperwork in early we would be able to get the chair sooner, because it takes a few months to custom make it.. So... they get the paperwork and deny it.. We knew they would do that becase he wasnt old enough.. So the moment he turned 2 we reapplied.. At this time we also tried to get a stander for him..

For those that dont know Alo has spina bifida and can not bear weight on his legs. The stander was to help him get into a standing position and get him to start putting some weight on his legs.. He has movement in his legs but his legs are very weak and the muscles along the backs of his legs do not work.. When he moves his legs it is because he is working the thigh muscle. Anyway.. The stander was for him to build up strength in his legs in hopes that it will help them get stronger and eventually walk. Alas.. When we applied for the stander and the wheelchair at once they denied both of them saying that if he needs a stander he does not need a wheelchair as well... I guess they expect him to stand up all day long in a stander. What about when we were out and about?? We couldnt take a stander there. We needed the wheelchair to take him places. The stander cant do that stuff.. Anyway.. They got all of that sorted and the stander was approved but the wheelchair was denied.. The reason this time was that he did not weigh enough and that I should be able to carry him where he needs to go.. Are you serious? What about his vent, vent battery, trach go bag, suction machine, oxygen, diaper bag, my purse, and my other kids?? Carrying him was not the problem.. the problem was carrying everything that went with him. So... they get all of this sorted and FINALLY getting somewhere. The plan was to order the wheelchair with a vent tray to hold all of his stuff.. I got the call yesterday that his wheelchair was going to be delivered today. WOOHOOO!!!!!

They came out today to deliver it. WOOHOO!!!! Its the cutest chair ever. Its soft, and comfortable for him, but no vent tray!!!! They have a battery tray for the vent battery but no tray for the vent itselt.. Anybody who has ever lifted an LP10 vent knows how heavy it is.. The vent alone is like 30#.. The vent battery is at least 15#. It is literally the size and weight of a car battery (and those things arent light).. So now, we have a wheelchair but no way to carry Alos stuff on it..

While I am teeved about this at least it is now instead of when he was on the vent all day long. Now, we can go out and not have to have the vent with us, but just a few months ago we had to carry the vent everysingle place we would go. He was sprinting before but not enough so that we could leave the vent in the car. He is pretty much only on the vent at night now but he still has days where he needs to be on it during the day. I just hope one of those days does not come when he is in the wheelchair. I guess we will continue to lug around the double stroller until we are certain that he will not need the vent during the day.

Anyway the whole point of getting the wheelchair was to be able to carry his stuff easier... I guess that just isnt going to happen now.. Im going to go take him for a walk around the block and test it out to see how he does in it.. Ill post pictures and stuff later.

Kaias New Glasses

29 weeker no known history of ROP (Eyes were never checked in NICU)

-250 in the left Eye
-185 in the right Eye
Astigmatism in both..

And cute as ever in his new glasses:


Thursday, October 9, 2008

You better believe it!!

I got the call this morning that.. (Are you ready).. Alos wheelchair came in!!! FINALLY!!!! After 2 years of waiting!!! They are going to deliver it tomorrow and as long as everything is ok we will get it tomorrow but if it needs adjusted then we will have to wait longer.. Im so excited for him.. Its going to be great not having to worry about his giant stroller... but at the same time I dont want everything that comes along with a "wheelchair".. I kind of like the stroller and how it makes him seem like a normal kid..

Monday, October 6, 2008

Free Newborn Diaper Lotto

For more information on the lotto go to Life as a Convert.

I will let this lotto run for 10 days. The deadline to enter will be Thursday the 16th of October at midnight CST. On the 17th of October I will randomly select a winner. The winner will be announced on Life as a Convert as well as contacted for further information!



Saturday, October 4, 2008

RSV and Synagis Ingredients

What is RSV?

Respiratory syncytial virus (sin-SISH-shul VI-rus) (RSV) is a very common virus. Usually, RSV causes mild cold-like symptoms, such as a runny nose and fever, in adults and children. But premature babies or those with lung or heart problems have a high risk of getting very sick if they catch RSV. This is because premature babies do not have fully developed lungs. Also, because they were born early, they may not have received enough virus-fighting substances from their mothers that help them fight off RSV and other viruses.

Each year, an estimated 125,000 babies in the United States are hospitalized with severe RSV infections.1,2 In some cases severe RSV infections cause up to 500 childhood deaths annually. RSV may also be associated with more long-term health problems, such as asthma.3

RSV season usually starts in the fall and runs through the spring. But it can vary in different areas of the United States. Ask your child’s healthcare provider when RSV season occurs in your area.

Symptoms of an RSV Infection
Usually, RSV causes mild, cold-like symptoms, such as a runny nose and fever. However, in some babies, the symptoms can quickly get worse.

Call your healthcare provider if your baby has these symptoms:

Persistent coughing
Wheezing (a whistling sound when breathing)
Rapid breathing
Problems breathing or gasping for breath

Be sure to ask your doctor about getting the synagis shot for your little one(s). For more information on the synagis shot please click here

What are the ingredients in Synagis?

Synagis, also known as Palivizumab, is an immunoblogulin commonly given to preemies and high risk children during RSV season (Fall to early Spring depending on where you are located). Synagis DOES NOT PREVENT RSV!!!! Many parents assume that these shots will prevent RSV but they are mistaken. The shot only helps to lessen the severity of RSV if the child were to get it. The ingredients in Synagis (Palivizumab):

- Palivizumab

- Glycine
- Histidine
- Mannitol

Palivizumab is the active ingredient.

Glycine is an amino acid. It is not an essential amino acid. It is often used as a sweetener, neurotransmitter or dietary supplement. Glycine is used in Synagis as a stabilizer.

Histidine is an amino acid found in foods high in protein. Histidine is converted into histamine by the body. Histidine, is thought to be a detoxifier, removes heavy metals from the body, produces gastric juices, helps protect the body against damage caused by radiation, and helps the body to know when an allergic reaction is happening (by the histamine). Histidine is available as a supplement. It is used in Snyagis as a stabilizer.

Mannitol is another sweetener. It is poorly absorbed by the body so many junk food companies like to use this. Mannitol is also a diuretic. It is sometimes used for patients with brain injuries. Mannitol is used in Synagis as a stabilizer.

Each 100 mg single-dose vial of Synagis liquid solution contains 100 mg of Synagis, 3.9 mg of histidine, 0.1 mg of glycine, and 0.5 mg of chloride in a volume of 1 mL.

Each 50 mg single-dose vial of Synagis liquid solution contains 50 mg of Synagis, 1.9 mg of histidine, 0.06 mg of glycine, and 0.2 mg of chloride in a volume of 0.5 mL

Synagis is latex free and is available in a powder or liquid form and is made by Abbot Laboratories.

Through the ups and the downs..


Alo may be small compared to his peers, he might not be able to reach things as well as the others, he might not be able to run, but he can still play baseball (tee ball, whatever) *Videos at the bottom*



And two videos:

Alo hitting the ball

Kaia hitting the ball

Wednesday, October 1, 2008

Happy 1/2 Birthday!!!

Wow wow wow!!!! How in the world did this happen?? My baby is 6 months old!!!

We made sure to have a small "party" with cake in her honour.. She slept through the cake but if its anything like bananas and breastmilk then I am sure she enjoyed it later.

Some recent pics of Aybra and the boys to celebrate.

Sitting pretty in her dress


Her and the boys



Kaia trying to get her to smile for the camera... One of these days I will catch a smile on camera