Saturday, May 29, 2010

Botox and ortho

Another week of doctor appointment and new potential problems. We finally had our first course of botox on Wednesday! I was expecting to see results the next day, but no, it takes about 3 weeks to really see how well she will do. I know, be patient - but I hate that.
Thursday we saw the ortho doctor for the first time. I already knew in my heart that we were having hip problems, but now we have the x-ray to prove it. The good news is that her right hip looks good, bad news is that her left hip is not forming. We had been told about this potential problem from the time that she was 4 months old. It is a result of her high tone and not being able to sit, or walk or crawl. The body is so amazing with how it all works together and develops and it is so sad to see that process be interupted.
The ortho doctor has ordered us a brace that will be here next week - this is good timing with the botox, it will allow us to see if she will even be able to wear the brace. If her legs are not loose enough to fit into the brace by 3 weeks, we will have to go to surgery. If we are able to get into the brace then we need to wear it 20 hours a day and we will see it that will do the trick or if we will be going to surgery. We know down the road that her back will be an issue, but that is down the road, so not worring about that now.
We also saw the GI doctor and he was happy with how she looks. So that is good!
Molly also has 2 more teeth peeking out. These are the top 2! She is also loving the warm weathter and we have been spending time outside sitting on the porch, enjoying the heat.
Thank you all for the continued prayers.

Thursday, May 20, 2010

Another busy week

It has been a bit since I have posted anything. I have started working and it is great to be out of the house. I am too busy at work to think about the world of problems, therapies, medications, ect. I miss my sweet little girl while I am gone, but she is well taken care of and I know this is what will make me a better mom for now.
Molly has a g-button now, it is already yucky and we are on ABX to try to get it back in good shape. She still is not taking as much as they would like, but it is way more than she was and she is gaining a bit. What is most important is that she is happy. It is all that we really care about anymore.
I have started to notice that her hips are starting to click. I am guessing that her hips are starting to come out of their socket. We were told that this would happen and were referred to Scottish Rite. I got the call this morning that they will not see her. She is basically too bad for them and they have limited resources and don't want to waste them on a child like Molly. They want to work on kids that have a better outlook. So now we will be looking for an ortho doc that is not with them and hope that they can help.
On a happy note, Molly is doing well in Therapy. She is sitting up more and has some head control. She is still having seizures, but no bad ones this week.
Brighton is doing great also. He is almost done with school and then I will have a middle schooler!

Friday, May 7, 2010

It is Friday

It has been a long and difficult week. We went on Tuesday morning to have the g-button placed so that Molly could get the fluid and food that she needs. We stayed at Medical City Dallas for 3 days and were able to come home late on Thursday. I am amazed at the amount of medical supplies that now clutter our home and we are busy learning the tricks of tube feeding and which supplies we need and when. I know that in a couple of weeks that it will seem very easy and second hand.
We had to reschedule our Botox appt for a few weeks from now, which I am very sad about. Out PT again today discussed how concerned she is about her hips and we know it will not be much longer before they start popping out of joint because she has not been able to move them the way she should.
We also had to delay our neuro appt because of the surgery and she is having more of the startle seizures again. Every time we up the dose of sz med that chases away the seizure, they stay away for a shorter period of time. This time it was only a few days before they were back again. I know that soon we be having another EEG and will be changing med or adding meds.
I will never understand the creul nature of life it kids like Molly. I would do anything to trade places and make it all better. I bargain with God repeatedly, but there seems to be no answer (I know that he has a plan, and I can not imagine what it is, but it is so painful. I cannot image any good from the pain, but hope that one day there will be some)
I will be starting work on Monday and have to say that I am excited. I think it may be the only thing that will keep me from going insane. I need to hear about out people's problems and work on fixing them instead of just fixing our family. I have been listening to a ton of review cd's to try to get my brain back in working order.
Molly will be well taken care of while I am at work. Her dad will be doing much of the work and we have some great great help during the day. We have requested a night nurse and hope to have someone setup very soon. Sleep would be wonderful a couple of night week!
Thank you all for continuing to pray for our family!

Sunday, May 2, 2010

A saying that I like

"Whenever one door closes, another one will always open, BUT sometimes it is HELL in the hallway!"
I do have to say that the Lord has provided over and over for us this year (but never the way I would have picked and still not sure about some of the things that he has done)! I also feel like almost all of this year has been in the Hallway and I am still looking for the door that will lead to the easy, flower lined path!
Thank you all for continued prayer! It is only God and his glory that gets us to tomorrow!

Busy upcoming week

I have to say that I am already so tired and the week hasn't started. Last week was very long and hard. Molly is having more seizures, so we have increased her meds and will see her neuro on Tuesday. I am very grateful that they will work us in anytime we need it. Molly has also pretty much given up eatting and drinking over the past two weeks. This has been heartbreaking and we spend hours each day trying to get her to drink. She has just lost all interest (we were warned about this happening due to the brain injury). Until this last week we were not going to consider a G-tube. I really hate the idea of having to feed my baby this way. I keep asking God why!
I am so sad, heart broken and mad. I wonder what our future will hold and want to protect her from everything that I can. Kelly says that he can't stand her not eatting any long so we will probably have the tube placed this week.
We also are scheduled for our first course of botox this week. This will hopefully relax her leg muscles and she will be able to rest a bit more.
We will see - This week will be something for sure.

Saturday, May 1, 2010