Saturday, June 27, 2009

Blog closing...

I think Im going to close out this blog.. I dont post on it anyway. I had intentions of it and I did keep it quite updated but Ive taken to posting all of the updates on Life as A Convert.. which is my other blog and covers more than just my kids. I planned on posting here only when there was some majour updates with the kids healths but havent really needed to post any in a while. The kids are doing well.. Alo is facing surgery in Sept for some teeth work but thigns are good. So hop on over to Life as a Convert and follow along there.

Friday, February 27, 2009

Alos Uro appt

Took Alo to the doctor today.. It was a follow to get the results from his last Urodynamics study and his last VCUG... Things were ok as expected... The only real problem with the tests were that he had to poop during the VCUG so it looked like he was constipated.. Oh trust me he isnt! He goes regularly which is a good thing with the spina bifidia.. He has orders for Milk of Magnesia as needed but I dont give it to him If he needs anything I go for a more natural approach and just give him some FSO. He does better with it anyway.. Anywho... they did say that he probably has something wrong with his sphincter which is making him leak and not be dry between his caths. (We were cathing him every hour at one time trying to see if he would be dry between his caths and he wasnt)... So with his next urodynamics study they are going to do another test and see how loose or tight he is.. Depending on that they will talk about surgery to fix it so he can be dry... but the good news is that surgery wont be until a few years from now!! Woohoo!!! As it stands right now this is the 3rd surgery in his future. They increased his muscle relaxer to see if that will help his bladder grow any... Not this past study but the one before that showed a LOT of growth (holding 120-130 compared to 30).. Still high pressures and super early leaking (around 30) but it is progress in the right direction. And I was really hoping we would get the results of his MRI but we didnt.. Neuros werent there. Only Uros. And we got there 7 hours early!!! Woops!!! I thought we were supposed to be there at 9.30 but we were supposed to be there at 4.. That sucked.. but luckily they let us do the basic stuff first (like weight and seeing the nurse to answer questions) so all that was left was to just see the doctor. We left and then went back at 4..

All in all I would say it was a good appt. Im crossing my fingers that his bladder grows more and stops the leaking.

Oh yeah and he lost more weight. He is back down to 12.95.. though I think that might have been an increase from his last visit with that scale I cant remember.. I want to say he was 12.7 last time though.. Eh who knows.

Thursday, February 19, 2009

Guess who is a big girl??

Aybra!! She is now officially sitting by herself.. She topples over some but all in all I call it sitting.

More pics on the regular blog : Life as a Convert



Saturday, February 7, 2009

M Preston Pant on LAAC

Im hosting another giveaway on Life As A Convert. This one is for a M Preston Pants. Come check it out.

Friday, January 30, 2009

Aybra appt..

Aybra had her routine follow up with the High Risk Newborn Clinic. This is the place where all of the doctors/therapists/etc get together in one appt (saves us many repeat visits) and do their work. Today she only had to see the doctor. Why? Because she is doing so darn well. They asked if I wanted to see nutrition regarding her being EBF still and I told them no. A nutritionist will not change anything. She will continue to be EBF until I feel she is ready and she is past 1 year (corrected). FWIW She isnt even sitting up now, so she is not ready.

Also, the doctor was fine with the no vaxing stuff and has no issues with it but the nurse seemed to have some issues with it. She asked me if I was going to homeschool her.. I thought Hmm this is a new question but I answered "Yes." She tried to tell me that Aybra wont be able to go to school if she isnt vaxed.. Bullcrap :) Im no dummy. As a parent chosing alternative, or rather non-mainstream, lifestyles I am well informed of my choices as a parent.

Anyway on to the other stuff..

The stats:

25 inches

Her alkaline phosphatase level is still elevated but going down so they feel no need to continue the calcium or retake her levels! Yes!!!! This means that she can go back on the breast FULLTIME! NO MORE BOTTLES!!!! Now.. the only thing is getting her there :( Her calcium was to be mixed into 6 bottles throughout the day. That was pretty much all of her feeds.. She became quite used to the bottles and now is starting to refuse the breast Argh!!!! Please pray that she will take back to the breast now.

Friday, January 23, 2009

Does synagis prevent RSV?

NO!! And any doctor who tells you this should not be a doctor! Synagis does not prevent RSV. Synagis is an immunoglobulin. It helps to "boost" the immune system so if your child does get RSV it takes less of a toll on them. Synagis works much like the chicken pox vaccine. Even with the "vaccine" you may still end up with the chicken pox.

Saturday, January 17, 2009

Aybra update..

This is going to be very brief as there is not a whole lot of new news. I guess that is a good thing though. Aybra is doing great after her little sickness. She has recovered and is back to her normal pre-sickies self. She had an appointment yesterday for synagis and according to their scales she was 15# 15oz but that was with a wet diaper, t-shirt and socks. Im guessing she is 15.5#. I really should weigh her on my scale but that just seems like so much trouble.

She has found her voice and she loves using it. She used to play quietly but now she plays quite loudly. She likes to scream and holler with her brothers. I figure it is only a small amount of time before she joins in on the screaming matches her brothers compete in on a daily basis.

Her brothers give her the world and she just eats it up. She never does anything by herself. She is not self serving at all! Everything must be handed to her or she is not happy. She refuses to even reach a few inches to get her toy. She wants somebody to do it for her. I find it quite funny but her brothers are happy to do everything for her, especially Alo. He loves his sister very much and every morning upon waking must crawl over to wheverever she is and give her a kiss. The only time she gets mad at him is if he takes her bottle but I dont blame him. That mama milk is some good stuff!

I realized I dont have many pictures from recently so over the next few days I will be snapping heaps of photos and will eventually post some here.

Saturday, January 10, 2009

Woes and more Woes

Things have been rather hectic around here lately (I tend to say that a lot)..

Alo had to make an ER trip last Friday for some respiratory issues and a high fever. Everything looked ok so they got the respiratory distress under control and sent him home.. Come Monday the fever was just going away but he started having more respiratory issues so again I rushed him to the ER where this time they could not really get a good handle on his issues. They admitted him and did lots of "pulmonary hygiene" (increased IPVs and bopping).. Turns out part of his left lung was collapsed and he had pneumonia again. He stayed for a few days and was released on Thursday. He ended up missing an appointment for an MRI (I was kind of looking forward to seeing the results from it) so it has been rescheduled for mid Feb. He is back to his normal self now. As I type this he is in his room throwing toys all around.

Aybra had her first little trip to the ER. Monday night as soon as Alo was taken to a room Fallon brought Aybra to the hospital so she could be seen in the ER as well. She was having some respiratory issues when I left with Alo but they got worse as I was gone. So, the doctors examined her and said that she has what brother has (duh!). Depending on what her X-ray looked like they were going to admit her but turns out her x-ray looked fine. She was sent home with some respiratory treatmeants. Today is the first day she has really felt fine.

Kaia ended up seeing the PCP on Wednesday. He has the same junk as the others. Surprise surprise.. He got some medicine as well and has been acting better. I would probably say that he was the first one to really get it but he is much bigger and stronger than the little ones and didnt need as urgent care. Alo was hit the worse by all of it but it only makes sense. After a few days in the hospital though he was sounding better than Aybra.