Monday, December 29, 2008

Kiddo updates

Aybra is well. She has learned how to wiggle around and now does it everytime she is put in the floor for tummy time. She will wiggle and wiggle until she is off of her blanket. She likes to watch TV and if the boys are watching something then she watches too. She is a very distracted nurser lately. She is just too interested in everything going on around her. She will suck for a few seconds then pop off and look around. Its making feeding very hard. Also she is getting to where she prefers her bottles. Hopefully she can get off of this darn medicine soon and get back to 100% breast. This pumping for her and Alo is killing me. Its not that bad too just pump for him but with her I never know when she is going to eat. Lets see... She jabbers a lot.. Like a TON.. Oh and she spits a lot.. probably more than she jabbers. She is very happy and thinks everything is hilarious. Her brothers never cease to amuse her.

Alo is Alo.. He got his AFOs and his KOs. The AFOs are soooooo tiny and then to think his leg and foot is even tinier than that! He doesnt seem to mind wearing them too much. His KOs he hasnt worn all that much yet but they are to help stretch his knees and position his legs better so he will wear them mostly during bedtime, but they have a lot of support and make it easier for him to do weight bearing so he will be using them for PT as well. He is getting better with pulling himself up. He is much much MUCH louder when he yells... If you have never had boys then you wont udnerstand but him and Kaia like to have yelling matches. They just sit and yell and yell and yell... Tis the life with two boys.. Im sure Aybra will be joining in soon.

He was a bit sick during the Holidays but recovered quickly and on his own! Woohoo! We are still holed up for the winter. Only a few more months to go and we will be free!!!!!

Kaia got a guitar for Christmas and is singing a lot of cute songs.. Two of them go like this:

Number 1:
"When I was a little boy I had a boat and I went to the river to see if it would float. It sinkeded so I went back home and my feet were wet from the water so I took my shoes and socks off and my feet were nasty and stinky"

Number 2:
"Twinkle twinkle little star, what did you have for breakfast? Did you have a poptart? Did you have spiderman? Did you eat the whole house? Twinkle little star what did you have for breakfast?"

He is doing extremely well with his school work and memerized his landline within 5 minutes, no joking. Papa taught him his mobile # but Kaia forgets some of it still. Kaia has graduated most of his PK work and is working on K stuff. Ive had to change a lot of my plans and goals for him throughout this year because of how fast he has learned things. This is one of the great things about homeschooling. He doesnt have to be bogged down with work that is too easy on him. Instead I can work in things that suit him.... like following directions. Hes not quite learned how to do that yet but Im guessing he might be an adult before he really learns that..

Thursday, December 11, 2008

Spina Bifida Clinic

Alo had spina bifida clinic today.. That means we did urodynamics, vcug, ct, shunt series, ortho x-rays, then saw ortho, saw neurology, saw PT, saw rehab and saw nutrition.. I HATE these days. They are sooooo long.

But I have good news... Alos last urodynamic study his bladder maxed out at 34ccs but started leaking around 28... This time he held 120!!! That is HUGE!!! Still not what its supposed to hold but that is a huge jump.. Also he doesnt have to see neuro or Ortho for 2 years!!!!! The bad news is if his fonatel is still open then they will talk about skull reconstruction. Yikes!!

Right now his fontanel is open from his forehead going back towards his ears... Its about 3 inches wide and 6 inches long from front to back.. Its closed a lot in the past 2 years but still has a ways to go. About 2 years ago it was probably 9 inches long, 3-4 inches wide and went from near the back of the top of his head to his eyebrows and he had an open spot on his forehead between his eyebrows... so he has made progress.. and hopefully will continue to make more.

And of course still no weight gain... Holding steady at 12.8k

Friday, December 5, 2008

Bracing, etc

Alo has been needing AFOs and some stretchers for quite some time now but we have never really gotten around to doing it.. Well Mr Steve from Snell Prosthetics and Orthotics came and cast Alos legs for the braces on Monday. Alo didnt seem to mind too much but gave him a few funny looks towards the end. Kaia got to pick out the colours. He wanted hot pink at first but ended up getting a truck theme with blue velcroe and multi coloured padding for the AFOs and the stretchers are going to be a sea theme with black padding and dark blue velcroe. Alo will have them in approximately 2 weeks.




Make A Wish

I think I may have found the wish for him... I said before nothing like Disney World because I planned on taking him there anyway (once he was older and more "stable")... I didnt want his wish to be something that I was going to do anyway. I mean whats the fun in wishing for something that you can do any time, right? I wanted it to be something that he would never get to do otherwise and be something that he will remember... Well the remember part Im not so sure but Im pretty sure Ive found the wish.. I just have to get it approved by the wish granters and funded.

This is it:

Its a park in Florida dedicated to special needs kids.

Wednesday, November 26, 2008

Emergency Diaper Bag, anyone?

As a parent we probably all have one. I d a couple of them. Each one served its own purpose. One was for supplies that were often needed but too bulky to carry everywhere. One was for supplies that were very rarely needed And then the other was a mix of the two. Today I slimmed them all down into one.

Here is the list of whats in the bag that serves as an Emergency Diaper Bag. Some of these items are very rarely needed but very important if we were to need one and others are there as backups because we use so many of them but do not have enough room in our everyday bag.

Diaper Area
5 caths
1 tube of Surgilube
2 prefold diapers
1 set of diaper pins
1 bottle of water
5 cloth wipes

Trach and Vent
1 Trach Tie
1 4.0 Ped Shiley Trach
1 Travel Vent circuit
1 PEEP valve
3 O-rings
4 Noses
1 Vent filter

20 suction caths
1 Yaunker
1 Suction Machine filter
3 Saline bullets

Clothing and Accessories
1 Outfit per each child
1 Hairbrush
1 Blanket

1 Sippy cup
2 packets Simply Thick
1 Feeding Extension Tube
1 Feeding Bag
1 10ml Syringe

1 CPT Bopper
1 bottle hand gel
1 Pacifier
1 thermometer
1 tube Bactroban Cream
1 tube Nystatin Cream

Thursday, November 20, 2008

Alo is home!!

Throw the confetti and blow the horns!! Alo got to come home yesterday with PO antibiotics. He was thrilled to get back home. He has been doing well and as long as sick people stay away *ahemhisnurseahem* then he shall continue to do fine!

Monday, November 17, 2008

Alo update..

He is in the hospital but should be getting to come home within a few days. He has a few things going on, but antibiotics should take care of all of them. Please keep him in your prayers!!

Saturday, November 15, 2008

Good news; Bad news

First off the good news...

Aybra has had a few appts since my last update on her. She was off of all of her meds but now she is back on one of them, which is bad news but hopefully within a month she will be off of it. She is off of her monitor though. That is great news. Her last weight was 13# 9oz at the doctor. She is 22 inches. She is still only rolling from front to back but I think she might start rolling the other way soon. She smiles and laughs a lot and is starting to get interested in toys. She loves to play with her brothers. She thinks they are a lot of fun.

Kaia has just been Kaia. He is quite a happy, outgoing little boy. He is very smart, sometimes too smart for his own good. He is doing well with his glasses. He doesnt mind wearing them, but will often take them off so he can play dress up. He is doing fantastic in his school work. He can now write his name "Kaia" and the numbers 1-5. His 3 looks more like an "M" but we are working on it so I think he will have it down in no time. His speech is improving, though strangers still have a hard time understanding him. I admit some of that is my fault because I do not approve of him playing with some of the children around here in our complex so I keep him away from them. (Their parents allow them to play with toys that I do not allow Kaia to play with and they play too rough and are much too mature for Kaia.. I would rather Kaia not play "spitting on each other") So, his main source of interaction with children is from Alo (and he doesnt talk) and from my nephew. I really do not have a problem with it though. I would prefer Kaia to be more into imaginative play than the spitting, or weapon play. Children these days are forced to grow up too fast so Im just letting Kaia be a kid for as long as he can.

Alo is good and bad news. Bad news first.. He is sick. He has the trach heebie jeebies. He had an appt last week and they took a culture, but it has gotten much worse this week and tonight he started running fever so if he doesnt make improvements with that then we will have to take him to the doctor. I never talked to the doctors after the culture so Im not sure what, if anything that he grew out from last weeks culture. Im just praying that he will improve and we will not have to go to the ER. He has been doing great for almost a year. His last hospitalization was 10 months ago. This is the longest EVER that he has been out of the hospital. The good news is actually excellent news. He has been working with PT as I mentioned in prior blogs.. He started about a month and a half ago and already is making great strides. He is able to put some weight on his feet. He is tolerating his stander very well and will actually use it to support himself in a standing position without crying! He is also learning how to pull up and stand at the coffee table, though its kind of a half-stand as his arms are doing a lot of the work, but even just a few months ago I did not know if he would even be able to do that. Ive got a video of him doing it but will have to wait until later to upload it.

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

Saturday, September 27, 2008

Shout-out to my "Homie" - 28.09.2008 - 01:50:47

Monday, September 22, 2008


Why waste your time posting comments that I will not approve. GET OVER YOURSELF!!! MOVE ON!!!! STALK SOME OTHER PERSONS BLOG!!!!!!

Saturday, September 20, 2008




I love you this much




Alo getting a treatment playing a game


Alo taking the dolls pulseox



Well Ive been meaning to post this for a while now but I wanted to do the 100th Post post first...

Aybra had an eye appt about 2 weeks ago and her diagnosis is now ROP - Resolved!! Woohoo!!!!!!! She still has to have some follow-ups for other stuff (Strabismus, etc) but she is pretty much in the clear. Her next Appt is in Octber. Her RT came and downloaded her monitor the other day and is going to talk to the clinic before her Appt to see if we can get rid of the monitor...

Wednesday, September 17, 2008

Pulmonary schulmonary

Alo had a visit with Pulmonary today.. They are worried about his lungs and heart. He is working too hard to breathe and needs to be put on the vent more so he can start doing better. He still has a lot of growing to do. More tests and more visits... Though his oxygen requirements have been great. He is able to come off more now as he tolerates it and he has been tolerating it really well as of late. They increased his feeds again to hopefully help with the weight gain. He was getting 30cal per ounce. They upped it by 5 cal.

Another day in the life of Alo....

Tuesday, September 16, 2008

100th post!

Bring out the confetti and cake; this is my 100th post on this blog...

Since starting this blog so many things have happened.. In celebration of the 100th post I will post 100 things that happened this past year.

1. Aybra was born.
2. Kaia started a second year of Pre-K.
3. It has been 5 months since Alo's last hospital stay.
4. Alo turned 3!
5. And even worse Kaia turned 4!! My babies are growing up.
6. Kaia officially potty learned (though he has been having some accidents lately).
7. I am back down to pre-Alo-pregnancy weight!
8. I got a new van.
9. I renewed/restored my faith in Jesus Christ.
10. Going with #9 I met some lovely Church people.
11. I met and lost a person I love.
12. I have become more modest.
13. I met some awesome mamas on and MDC through Aybras DDCs
14. I saved roughly $50.00 a month by Cloth Diapering.
15. And I helped convert a new mama to cloth.
16. I dealt with some horrible nurses/doctors and reinforced my belief that hospitals suck.
17. I learned (again) that Mothers and Parents truly do know what is best for their children.
18. I learned to fight hard for your children because nobody else will.
19. Kaia learned how to type his name
20. Kaia then learned how to write his name.
21. I got rid of some of Alos problem nurses..
22. But ended up gaining more.
23. I learned more truths than I care to know about vaxes
24. I reinstalled Diablo and got a Sorceress to level 50
25. Then Kaia deleted it!!!!!!!
26. Alo made improvements with his therapies.
27. Alo FINALLY had a PT eval.
28. Alo got a stander.
29. And SHOULD be getting his wheelchair sometimes this year.
30. I have learned to embraces Alo's "problems" (I hate that word)
31. Alo learned how to throw some massive tantrums.
32. Ive gained more patience (It helps with the tantrums)
33. I found some old friends and caught up..
34. and learned that some old friends passed away.
35. I learned how hard it is not to take things for granted.
36. I have cherished my children even more than before.
37. I realized that some people who have things so great do not appreciate it.
38. I learned that children will do things in their own time.
39. Aybra learned to smile.
40. She can also roll.
41. She overcame many NICU difficulties and is so far doing better than Kaia did as a baby
42. Kaia learned more about his father
43. Kaia seems to think that his father lives everywhere besides with Heavenly Father.
44. Kaia learned how to pray to Heavenly Father..
45. and thank for him the trees, and the houses and the floors and the doors and the carpets and the roads and the bridges and the water and his Baby Sissy and Bubby and Baby Hayden.
46. Aybra got a swing!!
47. I overcame my own supply isues...
48. Then I donated some precious breastmilk and helped a few babies and mamas.
49. I pissed a few people off with my hardcore Breast is Best beliefs..
50. I missed out on the birth of my dreams..
51. I had the worst c-section ever!
52. I started a new blog.
53. I started some new traditions with my family.
54. I ventured out more with Alo (This is a HUGE thing)
55. I watched a few good movies.
56. I started my 72 hour kits
57. and sadly had to use some stuff out of them from the lovely Hurricane Ike
58. I also started my 1 Year Food Storage
59. I created human life!
60. I completed more Kaplan terms
61. I educated people on the importance of NOT circumcising.
62. I got Baptised.. That is kind of important
63. I took a lot of pictures of the kids.
64. Alo adjusted well to having a new "Baby Sissy"
65. Kaia became Mr Mum.
66. Kaia learned how rain works (
67. I got my very first sewing machine. I dont know how to use it still, but I have it :)
68. I gave many things to charity.
69. I got brave enough to walk the trail by our house.
70. Alo wore shoes... He would never wear shoes before but now he has one pair that he wears. (SID issues)
71. Ive been blessed to have a great nursing6 r7ue8il9aot0pionship.
72. Aybra has become one heck of a champion breastfeeder.
73. I was able to shop for baby girl clothes!!!!
74. Alo started eating more fo5768o9ds by mouth.
75. Kaia started learning about different foods.
76. Kaia took an interest in video games (Bah!)
77. Alo took an interest in watching Kaia play games.
78. Kaia figured out how to work a computer..
79. And beat the mouse on the desk in frustration when "it ain't working"
80. Alo got his very own fridge.
81. Kaia learned how to say "Aloshua" and has become very proud of it. (A-yash-a-wah)
82. Ringworms.. Need I say more.
83. We went to the zoo..
84. Kaia played many racing games with Unc Ney (as in Uncle Courtney)
85. I saw some good people turn bad and some bad people turn good.
86. I learned things about my friends I never knew.
87. I re-found Aloshua the older...
88. I baked my butt off.
89. And in the process found a great new bread recipe.
90. I reflected on (and experienced) some of the best moments in parenting.
91.Alo became interested in the computer.
92. I counted my blessings that, while I have had some bad boyfriends in my past I never had any like Heidi had, namelySpencer from The Hills
93. Oh yes.. The Hills addiction grew stronger.. Who doesn't love The Hills??
94. My PISA gave out on me
95. I righted some wrongs.. Some really really wrongs.
96. And Im sure I made some wrongs even wronger (oh yes it's a word baby!)
97. I talked on the phone like a teenager.
98. Kaia broke my laptop and gave my computer viruses..
99. I opened many new doors in my life and closed out a few chapters.
100. I actually made it to 100!!!

Wednesday, September 3, 2008

2 month Corrected Pics + some others

First the 2 month correcteds... Pics are clickable






And it leaves much to be desired but its a start


Time flies!

Today Aybra is 2 months corrected.. Where has the time gone!!!

I havent taken her pictures yet but I will get some tonight and post them later..

She is growing like a weed.. Like a whole army of weeds! She is near 10# now. I weighed her the other day. I forget the exact g/kg but it was 9# 9oz... She is eating so much though so its no wonder she is getting so big Im having to pump a ton to keep up with her and Alo. She is nearly taking as much as he is!! She is getting stronger everyday. She will push up with her hands whilst on her stomach and look around. She can roll over from her belly to her back (then gets mad because she cant get back over). She is smiling more everyday and beginning to make some little sounds.

Speaking of Alo he has been doing great... No real problems.. He has been his typical self doing things he shouldnt then smiling and being cute so he doesnt get into trouble... He has been going to nursery at church and he loves it. They play and sing songs and colour. He has a blast. He isnt going to be going much longer though because RSV season is coming up.. Dreaded dreaded RSV season.. Im not even sure that I will take him to church (or any of the kids because of the risk to him)... But we will see...

Kaia has been Kaia. He is loving school (and Alo loves helping him).. He has been having some issues with his eyes and head though. I have to get that checked out. His speech is getting much better but its near time for him to have another eval to see if he can get some services.

Friday, August 22, 2008

Free Diaper and Shirt Lotto

This set is being lotto'd off over on Life As A Convert



I have taken the "Registered" restriction off of the comments. Now anybody can post a comment (even anonymous). Comments are still being moderated though.. Just a heads up.

Tuesday, August 19, 2008

Its Official...

At least I guess.. I mean if the announcement makes it official or anything then it is.. Otherwise.. AYBRA WAS BORN A LONG TIME AGO!!! (Picture is clickable to see larger version)


Monday, August 18, 2008

Blog Changes...UPDATE

Im changing the layout of the blog and need to resize all of my pics so they are fully visible.. Might take some time but wanted to give a heads up.


Well Instead of resizing all of the pictures (because then you cant see them) I decided to just resize the link.. All pictures (at least the most current ones) are clickable to see the bigger picture. Ill put reminders on the posts.

Friday, August 15, 2008

The Little Kids

Aybra was wearing her bib correctly but after a few swings of the hand this is how she ended up wearing it


Alo with one of his favourite games (He also likes Candy Land, and Operation... He likes to carry the cards around)


Remember this doll? .. Well here is a more recent shot with it:


And this is how she got that way!


Weigh to Grow Aybra!!!

3870 grams
3.8 kg
8# 8oz

Wednesday, August 13, 2008

More Pictures

Aybra in a skirty




Alo and Aybra.. Alo trying to pick her up and her giving him a "WTF" look.


Alo gets on these kicks where he carries things around... Flash Cards, memory cards, and the latest CDs.


Aybra yesterday.. Such a big girl!


How could I forget this one?!?! Aybra was having some tummy time and kicking her feet and swining her hands around.. Her hands happened upon this candy bracelet that Alo made so she grabbed onto it and into her mouth it went. She was sucking on it. It was so cute but so nasty. But, what does any good mother do? Take a picture before taking it away of course :)


And the best one for last


Aybra vs Alo

This requires a post all its own..

Alo at 10 months old, or 7 months corrected.

10 months

And Aybra at 4 months old, or one month corrected in the same pillow...


Sunday, August 3, 2008

Picture overload...

Just a lot of random pictures from lately.

Aybra is like a freaking weed! I bought a scale for postal stuff and I use it to weigh her and she is averaging 200 grams per week. She is getting close to 8# now. She had an appt on Friday and it went extremely well. A few changes but nothing too drastic.

She had her first zoo trip yesterday. It was hot but she did well.



Kaia said Im going to run really fast and you take my picture.. This is what I got


Playing pacman


Alo wanting to play pacman


Taking a bath.. She loved it. She sat in there for a while just kicking her feet around