Going Nowhere Fast

So, the appointment with Orthopedics proved to be fruitless. Yes, she does have a hip that is slightly dislocated but it's her left, not her right like we thought. She has a terrible contracture in her leg on the right side but they can't do anything about that, nor can/will they do anything about her dislocated hip or her scoliosis (she has a 35 degree curvature in her spine). It was all a bunch of blah, blah, blah about how they don't think she's experiencing any pain (really now?!) and how surgery would be pointless (which we already knew). About the only thing he said worth anything is that there's nothing we aren't doing that we should be and he suggested asking Physical Medicine about Botox injections in that right leg contracture in case that may be causing her some "discomfort".

I feel a little like screaming at them. How can they possibly say, "Yes, she has scoliosis" but "it doesn't hurt"?! I was told as a kid that I had a very slight curvature in my spine and I've had neck and back problems my whole life that cause me "discomfort" that leads to lack of sleep and headaches. I don't see how they can say that a 35 degree curve isn't giving her any pain. It's so unfair that she can't speak for herself!!! The doctors seem to think that we have no idea what we're talking about when we say she's hurting... but they don't see her crying when you touch her right leg or when she's sat in one position too long or made to be in a position that hurts her. It's so incredibly aggravating.

We have since gone up on her Keppra again (anti-seizure medication) because we started seeing increased seizure-like activity and we've added in an extra dose of Diazepam per day as well (she went from getting it every 8 hours to every 6). This seems to have helped at least a little but she's still not on a regular sleep cycle and we're beginning to think that her bed is just not comfortable enough for her. So, I'm going to be shopping around for some kind of mattress topper (don't know what you call them).. like maybe Posturepedic or something like that. I don't know if it will help the issue at all but it's worth a shot.

On a more positive note, we took a few St. Patrick's Day photos today (well, since it's 2am, it was actually yesterday lol)... here's one for y'all to enjoy!

 



We have our appointment on the 21st for Botox so I will let y'all know how that goes! Hoping we can convince them to do the Botox in that right leg as well as her ankles! Keep her in your prayers please!

Looking Ahead to 2013!

Since my last post, we made and went to an appointment with Analeigh's Physical Medicine & Rehabilitation doctor (PM&R) at Texas Children's. We explained the worsening pain we believed she was experiencing which brought about a number of things. First, they put her on Baclofen which is a muscle relaxer in order to help loosen some of her tone. Second, we discussed and scheduled Botox injections for her ankles (which we will do on March 21st, 2013). The injections will be followed by fittings for braces, all in an effort to prevent her contractures for worsening. They do not expect the procedure to correct the problem, but rather maintain her current state. Dr. Collier referred us to have labs drawn and x-rays done which we did a few days after our appointment with her.

I got a call back from them saying the labs were slightly elevated but nothing to be concerned about (perhaps she's getting a cold or something) but the x-rays were cause for much concern. They revealed that her hip has indeed dislocated further and she has scoliosis. In addition to that, they said she has a condition that causes her to have weak bones which is not uncommon for kids with "Analeigh's problems". Because of this new information, we now have appointments scheduled with Ortho on Jan 17th, 2013 and a geneticist on April 25th, 2013.

Now, the Baclofen Dr. Collier prescribed has been a tremendous help in that Analeigh already seems to be much looser. Physical therapy said it's easier to work her out and we find that it's even easier to do the simple things such as bathe and dress her. BUT... yes, there's always a "but".... she suddenly stopped sleeping well and recently I noted some seizure-like behavior. I recalled that Dr. Collier mentioned that Baclofen lowers the seizure threshold for some patients which made a lot of sense with the behavior I was seeing. SO.... we already had an appointment scheduled with Neuro for Jan 10th, 2013 but I called them and explained the situation. They have agreed to increase her Keppra (anti-seizure medication) which I am hoping will not only slow/stop the seizure activity but help her sleep as well.

In the middle of all this, we suspect it's time to change trach sizes so we have an appointment scheduled with her ENT on February 5th. It's also time to pick out a bed for her that Medicaid will pay for when she turns 3. It takes a long time to push these things through so we have to get started pretty soon if we want it within a few months after her third birthday... so that appointment is scheduled for February 19th. We also have a follow up appointment with her pulmonologist on Jan 22nd.

It appears we opened Pandora's box with that initial visit to PM&R but we knew it was time to do something. We had no idea it would lead to such a crazy schedule or that we'd discover so many underlying issues we didn't even know existed. We were really just after some kind of pain management plan but it's turned into a whole mess of things. I just hope that there is light at the end of this tunnel for Analeigh. I don't want her in pain if we can manage that. I don't expect the doctors to come up with some miracle cure... I don't expect that she will ever walk. I do, however, hope and pray that we find a way to keep her pain level at a minimum and get her weight bearing so that surgery on her dislocated hip becomes an option we can actually consider.

With all of this being said... we had a good Christmas this year. I had won a free family session with a very talented photographer that I used for our Christmas pictures this year and she did a fantastic job for us! The kids all looked beautiful! We did Christmas Eve at home with Analeigh and then spent Christmas Day at my parents' house with the whole family. 2013 is going to prove to be a busy and trying year for us but I'm hoping that with the challenges come some blessings. We'll be looking for a new place to live in the middle of all of our appointments and I'm praying now that God steers us in the direction we need to go. We have some very specific needs and I'm hopeful we find the place for us that meets them all. Especially since Michael's job is supposed to start picking up after the first of January and it's possible he'll be away from home a lot more.

I just realized I forgot to mention that our newest addition, Brennen Craig, was born as scheduled on November 13th at 1:30pm. He was 9 lbs, 10oz and 21" long... and absolutely perfect! He's about 1 1/2 months old now and a pretty good baby. He has a little bit of a problem with newborn constipation but other than that, he's a good boy. :) Jayden gives him kisses all the time and wants to hold him every now and then which is really sweet to watch. Analeigh doesn't seem all that aware of her new brother but I think somehow she knows he's here.

I'm going to post a few of the kids' Christmas pictures for y'all to see... I'm so very proud of them!! Hope you all had a very Merry Christmas and have a wonderful new year!