Different

Brrr, December! Although it’s cold, it’s finally starting to feel like winter, and this year we got to enjoy a white Christmas- perfect! Last year, Christmas was the “thing I had to get through” before Meghan was born. What a joy it was this year, to be able to celebrate with both of my sweet girls in my arms. Meghan has really enjoyed playing with all her new toys. We were also overwhelmingly blessed by people- some which we have never even met- with notes, and gifts and cards for Meghan, and Addie, some who have been praying for us and with us since the beginning. We are so thankful for the love you have shown our family!

Our December was interesting. The week after we got home from Philadelphia, we attempted a pituitary stimulation test at the request of the endocrinologist. I won’t go into great detail, but suffice it to say that I called off the test when it was clear that it was causing her undue pain and suffering. Unfortunately, there wasn’t a great plan for how they were going to accomplish the test. There has to be a better way to get it done, and when they figure out what that is, we will revisit the idea of completing it. As a medical professional, I can understand needing to gather necessary data to determine the best course of treatment, but as a MOM, I have to protect this little girl from as much as I can. There will be so much in her future that I will not be able to shield her from- physical pain from additional tests and surgeries, and quite possibly emotional pain from situations beyond my control- but that’s on the worry shelf for later. One day at a time. For now, I am doing what I think is right for Meghan. The test can wait. Rounding out the month we also had a follow up with the ophthalmologist. We are continuing to patch her for 30 minutes a day, and it seems to be helping, so we’re following up in a few weeks. I love uneventful appointmentsJ

With Meghan around, there were some new holiday traditions this year. One of which was a Christmas Eve visit to the Orthotist to pick up her SPIO vest (what says holiday like an appointment?!...Joe and I laughed at that one. It sort of defines our new realityJ) It’s pretty nifty, and it’s PINK! We have resumed PT and OT, and right now our big thing is working on sitting, with the help of the vest. She still requires support to hold her head, but with the vest I can almost totally have her balance her trunk on her own. Kids usually work on sitting by putting their arms out for support. Meg won’t bear any weight on her arms yet, so we help her practice until she’s tired. She has her own way of letting us know she’s had enoughJ We’re also in the process of getting her a seat positioner. Between sleeping, napping, and playing, she spends a lot of time on her back. She’s outgrown the bouncy seats, and it will help her to be in a better supported position to begin to relate to her world as upright as possible, while still being able to support her neck. The funny thing about getting this chair is that it bothered me a little. It struck me that this is not something you normally buy…this is specifically for special needs children.  I have known for quite some time that I have a special needs child, but when you get down to the stark reality of it, the idea that things are different….and confront the reality that there might be a part of you that is uncomfortable with being different….well that just makes you think! When I look at Meghan, I see my daughter. I see this sweet, snuggly, charming little girl. I don’t see special needs. I know that she is different, but the only thing that bothers me about that difference is that things will be more difficult for her than for a typical child. I don’t want others to look at her with the discomfort of difference, but rather I long for them to see her through my eyes, and for that matter, to see every special needs child through the eyes of a parent, the eyes of love, and the eyes of Christ, who created each and every one of these lives as precious, sacred, and beautiful. The same eyes that look at each and every one of us declaring that we too are “fearfully and wonderfully made”. I am grateful for Meghan’s abilities, AND her challenges. It’s what makes her, her. There might be some people who won’t understand that in the future, and I think that is what I am afraid of more than anything. When they recognize her difference, will I be able to defend her? Will she be able to defend herself? Will I do the right thing as her mother when faced with someone who might not understand? When I was pregnant, the poem “Welcome to Holland” helped me start to wrap my brain around being Meghan’s mom (see my very first post if you haven’t read it).  There has been some “talk” in the special needs community about whether or not Holland is the right way to describe where we live as special needs parents. My conclusion?  I have no idea where we live, or where we might end up in the future. All I know is that wherever Meghan is, is home.

I am different. I am different now, not because I am a special needs mom, but because I am forgiven. And that, is the only difference that matters.  

“Therefore, if any man is in Christ, he is a new creature: old things have passed away; behold, all things have become new.” 2 Corinthians 5:17

Traveling

What a week! Miss Meghan has officially earned her flying wings, and she did fantastic. Our trip Philadelphia went about as well as we could have hoped, so THANK YOU to everyone who was praying for us while we were there.

We learned a lot about her anatomy: specifically that the two hemivertebrae that are in her cervical spine (neck) are on the same side.The surgeon described it as a stack of blocks, with two wedges inserted in between entire blocks, causing the stack to tilt. Here is a picture to help you understand:

(ourorthopaedics.blogspot.com)

The second vertebrae did not form correctly on one side, and the joint, and possibly the ligament, on that side that holds the first and the second together is not present. That is the part that puts her neck in the category of “unstable”, meaning that abnormal motion in the spine could occur and injure her spinal cord. We learned that she will definitely need surgery to 1) fuse the bones to stabilize her neck and 2) correct the tilt caused by the hemivertebrae. The surgeon said that it is important to correct the tilt as it causes problems in how the brain relates to the world when the eyes are always interpreting the information from a tilted position. Unfortunately, the fusion will significantly restrict the range of motion in her neck. He said it will be a fine balance between her function, and her fusion. This will take place at some point between the ages of 2-3, when her bones are more completely formed, and able to handle the hardware. In the meantime, she may need to wear a brace. We also discussed the hemivertebrae in her thoracic spine (chest). The good news is that the two bones are on opposite sides (like in the first image above). This means that the two wedges may just cancel each other out, and the scoliosis won’t become too severe (which would mean no surgery in her chest!). We will follow this with X rays every few months to monitor the curve. 

Today rounded out our crazy week with her regular pediatrician appointment, and another visit to radiology. She has gained a little weight on her new diet, so we are pretty happy about that! Next was the Upper GI series which was a special XRay with dye of her esophagus and stomach to check for abnormal connections. It wasn't too traumatic, and Praise God, it was NORMAL.  Ah, reliefJ

Our neurosurgeon called this evening to talk about Philadelphia and another expert opinion she was able to get (side note: seriously, this doctor is amazing- she is fighting for Meg as hard as we are), and we were able to come up with a plan. Meghan has another MRI scheduled in February to look at her brain, and entire spine/cord again. We will make a decision at that point as to whether or not she needs to wear a neck brace until she can have surgery, monitor her Chiari Malformation, and also to see if she needs surgery to correct the tethered spinal cord. It’s our “next step” in what we are told is going to be a long road ahead.  

I can see there is a road ahead, but right now the details are fuzzy and in order to travel it I have to focus on the car in front of us. One. Day. At . A. Time. Meghan has a pituitary stimulation test next week that is not going to be particularly pleasant for her, and another eye exam the week after to monitor her strabismus. In the meantime, we are cleared to resume a modified PT/OT routine which means we are getting back to therapy! I am really glad to get back so that we can help Meghan meet her goals, but it definitely adds the stress of more appointments again. With the holidays approaching, it all feels a bit overwhelming (ok, it’s a lot overwhelming….), but  I firmly believe that God created days in 24 hour increments on purpose, and that is all I am meant to handle at one time. (He also gave us Google Calender, and Starbucks for the days when we need a little extra help). SO, at the end of the day, I am rejoicing at all the positive news we got this week, and trusting Him with the plan for the future. After all, He is the one driving the car, keeping my path straight, and providing a priceless insurance policyJ  

Ready for takeoff!

When in Philly, get a cheesesteak....

Playing with Daddy:)

I tried to convince her that it was really "vacation". We went to the pool:)

CHOP has hospital gowns in her color!

The one as well

Hello, DecemberJ This month is unbelievably busy for us with Meghan’s appointments, but thankfully there is Christmas merriment tucked in places along the way to make the month a little sweeter. Our tree and lights are up, and the joy of watching Addie dance around the living room with excitement over decorating the tree was priceless. You only get one three year old Christmas, and I am soaking it up!

Tomorrow we leave for Philadelphia to see 2 different doctors about Meghan’s spine. There are moments when I still cannot believe that we are traveling to a different state to see doctors, but with as complicated as her issues are, it is where the experts are, and so there we will go. We have been continuing to pray for wisdom and answers, and trying not to be fearful about what is to come. Her spinal anatomy is complicated, curved, and incompletely formed. It’s not just one issue, but many. There is tremendous fear that she will suffer significant disability, or become paralyzed because the ligaments and bones in her neck are considered unstable. I desperately want to know what we can do for her, and just for someone to at least have a plan of how we can take care of her going forward. Last night, I was praying, seeking, and asking the Lord to go before us on this trip that we hope brings these answers. Here is one of the first things I read:

Consider what God has done:

Who can straighten

    what he has made crooked?

When times are good, be happy;

    but when times are bad, consider this:

God has made the one

    as well as the other.

Therefore, no one can discover

    anything about their future.

Ecclesiastes 7:13-14

Ok.... So we may get answers, and we may not. I have learned that knowledge doesn't necessarily bring peace. The answer may very well be “wait and see”, and at least we know how to do that.  I could drive myself nuts worrying about the future- but we don't have that yet, and we can't possibly know what it is. Good or bad, He has made the one as well as the other, and He is sovereign. Whatever is in store, we can be certain that it was His will, and that brings me a lot of comfort. He set aside this time for us to go, and provided a way. All we have is today, and today I have the privilege of having Meghan. So Philly, here we come.