The countdown to Christmas begins!

Torah working with her therapist Bonnie. She is getting better about being up on her hands and knees and actually putting weight on her hands - but we are only a mile down that road with many more miles to go! I was just thinking the other day that a year ago she could barely hold up her head on her own and now look at where she is!! 

Well, we made it through Thanksgiving. Stomachs full of food (Yes! Even Torah got her taste of the wonderful food as well). It snowed today and that helped me really get into the festive mood. I even decided to be one of those people that turn on their christmas lights (the day after thanksgiving).

We are still fighting with the insurance company on a few different things right now - but the major one is Torah's new reflux medication. Evidently liquid Previcid is a very expensive medication and even though it was pre-authorized and approved and should have been paid for by now, we are now waiting for it to go before the pre-authorization group to be looked at AGAIN because it cost more than 50 dollars. Should that not have been known information the first go around????? So it has been over 2 weeks since the doctor prescribed this medication and we are no where close to getting it. I just hope that it actually works and helps her reflux (otherwise I might feel really bad for all the work the doctors secretary went through to get this paid for).

I think she is growing again (or at least getting ready too). She has to be 30 pounds or more right now and her clothes that fit her a few weeks ago are now tight. I was hoping to make it through the winter season wearing the clothes I bought her about a month ago - but at this rate, who knows? I know . . . they grow and they grow and they grow (Jace has proven that to me already) but that still does not make it any easier on the budget.

Hope everyone had a wonderful Thanksgiving, we missed seeing all the family - but we are looking forward to Christmas time!

A Good Day!

The last few weeks during Torah's therapy sessions, she seems to be really not into the therapy. She always cried as soon as anyone would start working with her and I was starting to worry that she is just not wanting to work (like she figured out that if she cries - they will not make her work as hard). Well yesterday she had a great day and did very well. They found out that if they tear paper up she will laugh and I think we did that for about 15 minutes. She also did her crawling position good with no crying. After her OT we do her pool therapy and last week was not a good session - but yesterday she did great. She is getting stronger and is doing good with the sitting up, but she likes to throw her self backwards. 

Not much going on for our thanksgiving, I think we are just going to have a normal day and enjoy having a relaxing day. Although Bob is talking about heading up into the mountains to cut some more firewood before the snow gets bad. 

We hope everyone has a wonderful holiday with your family and friends!

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).