September's Appointment

We had our 6 month appointment on Tuesday Sept. 10th. We had absolutely no good news... I shouldn't say that, got to look at the positive right?

Our doctor did state that he had some ideas on how to increase her mobility in her left arm. I know at the beginning of the blog I had stated that on her left side Morgan had little to no shoulder blade. Well we found out that is not entirely true. She does have a partially formed shoulder blade, it just sits on top of her shoulder instead of on her back like a normal persons. The doctor has an idea that he can rotate that off of her shoulder and onto her back, then suture it in place, and this should free up her arm and give her more movement. It will add to her recovery time though.

He will be replacing the smaller rod in her back as well and when he puts the new one in, he will be putting it in a different place i.e. attached to a rib and the spine instead of from rib to rib. This will also add to her recovery time.

                                                                  

      The U represents where the new "hook" (for lack of better terms) will go. The dot is where the new rod will attach. The rod with the red line through it will be taken out.

The doctor also stated that he had talked to numerous other doctors at a national orthopedic convention in Florida. He got a lot of ideas from them. He also spoke to a doctor in St. Louis, who he is eventually going to refer us to.

Our doctor also stated that Morgans spine is still continuing to curve. Our doctor stated, in not so many words, that all he is doing is slowing it down, not curing it. I need to talk to him again to clarify but he made it sound like that if we continued the way we were going, Morgan would eventually be crippled. He told us that the doctor in St. Louis was a great surgeon and would most likely be able to cure her...

The doctor in St. Louis stated that he would essentially disect the mass of bones in her back and "create" vertebrae from those(see red lines below). The problem is is that it is a very high risk surgery and if it does not go right, any damage is most likely to be permanent, but if all goes as planned it could allow her the chance of a normal life.

                                                                 

So this is what seems to be our options:

Do nothing = crippled
Continue current treatment = crippled
Surgery in St. Louis = paralyzed/permanent nerve damage or chance of living normal life

The choice seems clear, doesn't it? How do you make that kind of decision for someone, even if it is your child? I will tell you, it was a long, quiet car ride back home that day.

Some thing to think about though. If we do see the doctor in St. Louis it will not be for a few years. A "few" years in medical science is a long time, some new treatment could be found in that time frame.  All I can do is have faith.

Our Morgan in the News

Our little Morgan made the 6 O'clock news on  Tuesday August 13th.

Even though Carrie and I felt like we were bumbling idiots during the interview. Jenny You from WEAU TV-13 edited like a champ. Morgan stole the show and I am so proud of her.

The news article and video can be seen here.

Newest X-Rays

So we were going through some old hospital papers, and we came across some of Morgan's newer x-rays. They are kind of crazy looking. 

First up is the one they took just days before her first surgery:

Drawing in MSPaint is a lot harder than I remember. Anyway, a few things to look at here.the red dots represent where the Doctor would like the bars/rods to attach to either the spine or ribs. What interests me though is what the doctor had highlighted. the open red circles represent bones, those are just a few of the pieces of bone that have replaced her vertebra , and the only bone fragments that can be made out in this x-ray.

Now on to what her x-rays look like with the new adjustable rods:

You can see that they are pretty well matched with where the doctor had wanted to place the rods(see photo above). The doctor had stated that the ribs where the smaller rod attached to were mostly cartilage, so that made things easier as they were more flexible than if they had been bone.

Things have been different with Morgan since the surgery though. The rods, specifically the short one, has limited her arm movement. She can no longer lift that arm above her head, it is painful for her as well to try. No more picking her up underneath the arms as we once did. Where I use to pick her up all the time, she rarely lets me now... I think I miss holding her the most. It is all for the best I suppose.

Doctor's office photos

Just thought I would add some photos of our baby at some of her appointments.

                             Morgan and Mommy getting ready for X-Rays.

                                      I guess even kids have this issue.

                                                               So cute.

                     Wearing her "sock" before her mold for her back brace

                                                                                                                                                                       Her mold. She sat so nice and good. She made sure to let her Doctor know that he had the same  name as a character on Spongebob... Gary.

                     The design she chose for her back brace. It is called "Sweetheart".

                              When she got it about six weeks later.

                                     A laugh with daddy.

                                  The signature Halls sleeping maneuver.

                           An original. "Stay Away from the Fox Hailey" by Morgan Halls

March 2013 - Surgery 2

This surgery we kind of knew what to expect. Still did not make it any easier. The nurses at St. Joseph's hospital did an excellent job taking care of our little sweeter.

This surgery was only about an hour long but it was a long hour. They had made two more incisions, but they healed up nicely.  She only spent one night in the hospital this time. She still missed the week of school.

They have also informed us that they had moved one of the rods as far as it could go and needs to be replaced during the next surgery. Hopefully this one will happen before the end of the year.

I did not notice it before, but after this surgery, if I rub her back, I can feel the rods and in one place, even the pins.

July 2012 - Surgery number 1.

So in July of 2012 we had our first surgery. It lasted about 5 hours... 5 of the longest hours we have ever had. After all the options they had given us, they decided that the two rods in her back were the best option for straightening her spine. The doctor says that as of right now, there is no safe way to fix the mass of bone in her spine, so they just want to concentrate on straightening her spine.

 She was one crabby girl during this time. She did very well considering what she had gone through. It was a long two week recovery. With some rashes coming up, an infection scare, and a "peepee" issue. She was such a brave girl.

The surgery was a success, as the spine is actually straightening out and the rate at which it curves is slowing down or reversing altogether. 

The last two years...

       Well the last two years have been busy and stressful for us. Not only has My oldest daughter come to live with us but Morgan has had her surgery... two surgeries. Her first was rough, it happened in July of 2012, then a rod lengthening in Mar. 2013. 

The wife has asked me to update this blog as she is attempting an online fundraiser to help with some of the doctor bills. While we don't enjoy asking for help... we are left with few options. With a ongoing bill that will never really go away, and with the price of the rods they put in costing around $130,000 we have no hope of catching up. Our health insurance does help a lot but it still leaves a large chunk for us to pay for.

The link for the online fundraiser is www.youcaring.com/medical-fundraiser/gearing-up-for-number-three-/78846