Nothing new

Nothing new going on here with Torah or the rest of the family. I guess no news is good news.

We are still waiting to hear weather or not we can get her new reflux medication. The insurance company has pre-approved it, now we just need to wait and see if they will actually pay for it. So currently she is still using the Zantac and she continues to have problems with the gagging and retching, but I have figured out if I slowly feed her all through the day she does ok.

We are scheduled to head to The Children's Hospital in Denver in about 3 weeks. I am thinking that the appointments will turn out to be just routine check-ups, but in a way I am hoping that the doctors will find or discover something to help them figure out what is going on with her.

I have connected with so many new mom's of kids with ACC over Facebook. Knowing what some of their kids have gone through and overcome I am very positive that Torah will one day pull through all of this to where anyone that does not know her would never be able to tell that there is anything wrong.

She does get stronger everyday, but she is also becoming a 2 year old . . . meaning that she likes to throw crying fits when the therapist trying to work with her. If you try and make her do something that she does not want to do (like feel something with her hands - or put something in her mouth) she will let you know and pretty much cry the rest of the session. I am hoping that she will stop doing that soon, because the therapist feel so bad and dont want to work with her. As soon as the therapist leave the room or our house, Torah is back to her normal happy self until I try to work with her.

Getting Stronger

Here we were trying to get her to sit up on her own. She has done this by herself for about 20 seconds. She also has managed to use her back muscles to pull herself up into a sitting position. Now if we can just get the balance down we might be able to get somewhere!

Here is Torah working on her crawling . . . ok so not so much crawling, but she is getting better about getting up on her knees and hands. She actually stayed up on her own for a few seconds with no help yesterday during therapy.

We are still fighting the insurance company to cover the new reflux medication that the doctor ordered. Hopefully we will know something by the end of the week. She is back to her happy self and very active. She did good in her Occupational Therapy yesterday - but did not seem to care for the Pool Therapy (Jace had fun though!!).

We hope everyone has a great THANKSGIVING!!!

Still fighting the Reflux

Well, we went to the doctor again on Wednesday and because she is still having problems with the Reflux, the doctor decided to put her on Previcid instead of the Zantac. Well, surprise surprise - the insurance does not want to cover the Previcid.

I have put a call into the doctor to see what she wants to do. Otherwise I am stuck calling the insurance company to see if there is anyway to get the Previcid covered. 

Everyone is doing better and I think whatever virus hit us has left and we are now recovering. Torah still has a pretty bad cough, but the doctor does not seem concerned. We are also looking at some new Pediatricians in Casper (a town 40 miles to the West of us) to replace Torah's current PCP. We have till January to find a new doctor. I have asked several people for suggestions and have receive a good response, so I hope to find a new doctor soon.

Reflux

I took Torah in to see the doctor again today because her coughing and spitting up were not getting any better. We think that her reflux is acting up again. They did do another chest x-ray and some blood work which both came back normal. Torah's PCP called the Special Care doctor in Denver to see what needs to be done to help and they have decieded to put her back onto pump feeds (we have been doing bolus feeds for a few months) and also to bump up her reflux medication to full strength. We go back in a week for a follow up and if nothing seems to be helping then they will change the reflux medication for a week to see if that helps. After all that, if nothing else seems to help - then they will order a Upper GI to see if the fundo came loose.
We also found out that Torah's PCP will be leaving in January to go back to Minnesota. So we are on the look for a new PCP for her her in Douglas. Pray that we will be able to find one that will be able to work with Torah.
We did go back to Kansas for Halloween. Jace had a blast and we surprised a lot of family and friends. Torah did good with her health and I think that she enjoyed seeing her grandparents.

ER Visit

I took Torah to the ER last night because her coughing and vomiting was not getting better. I guess I was worried for nothing. The doctor ordered a chest x-ray and I guess that came back fine (they really did not say). I am wondering why they did not do any lab work - but that was their descision. They did order her some medication for a possible infection and also some to help with the vomiting. We were in and out pretty quick. 

Today she seems to act a bit better, but she is still coughing and retching about the same. I am trying to give her extra fluids to help with any dehydration. She slept quite a bit yesterday and is still taking a lot of naps today as well. Hopefully she will be better before the weekend. I have costumes for both of the kids to wear for Halloween. I think that they will have fun (as long as it is not freezing again this year). 

Never knowing what to do

Well Torah has been kind of sick again and I have been debating in my mind weather I should take her in to the ER to be seen by a doctor or not. Last week she was a little dehydrated and was retching and vomiting. She seemed to get better on Monday and besides being cranky and crying at night, she was pretty healthy. Mid-week she started to get congested and developed a small cough which as of this morning was worse (sounds like she is coughing up a lung). She also seemed a bit dehydrated again - so I pushed the fluids today and as of tonight she is doing better. She did do a bit of the retching and vomiting tonight at a party we went to. I am thinking that if she is still the same tomorrow (sunday) or if she gets worse, I will take her into the ER. 

New Address

I want to apologize for changing the address for Torah's Blog page. I was battling between two different e-mail address and I found a way to simplify everything - the down side was to change her Blog page address. I am going to post this everywhere I can so that anyone looking for this info will know where to find the new address for her old Blog page. I am also going to try and copy all of my other entries over to this new address. Just give me time :o)
Thanks again for all the prayers and thoughts for her and us. Oh, and I wanted to share a video I saw on youtube.com

http://www.youtube.com/watch?v=th6Njr-qkq0

I hope you enjoy and are as touched as much as I was.