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.
Friday, October 10, 2008
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:
-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!
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):
Medicinal
- Palivizumab
Non-Medicinal
- 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.
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):
Medicinal
- Palivizumab
Non-Medicinal
- 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..
WE CAN PLAY BASEBALL!!!!
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
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
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
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