Friday, October 24, 2014

Happy Birthday Bexley!!

Today, our sweet little Bexley turned one. Can you believe it? I know we are finding it hard to believe our little baby is one!

As her first birthday approached, I have spent a lot of time thinking about everything that has happened in the last year. I think most parents would agree that the first year of parenthood is tough, but with the extra challenges we have faced, this has been by far the most difficult year of my life. Bex has probably spent more time in hospitals and doctor's offices in her first year of life than I have in my entire life. I have had to hold her down while she screams to have her blood drawn more times than I can count. There have been times I have tried so hard to hold it together, but have ended up breaking down in tears listening to a doctor talk or while asking questions. I can't stand the smell of Pampers diapers because it brings back all the memories of the two weeks we spent in the hospital with her.

As hard as this year has been, it has been one of the best years of my life as well. I can't even begin to describe the amount of joy Bex brings to our lives. There are also so many things that Chris and I have to be thankful for:

- We are Parents!: It took us two years to get pregnant with Bex. Two years ago at this time, we were in the midst of fertility treatments and beginning to wonder if parenthood was even in the cards for us. We have been blessed with a beautiful, strong, and amazing little girl and we are thankful every day for her.

- Amazing Family and Friends: The support we have received from family and friends has been truly amazing! We are so fortunate to have so many wonderful people in our lives, who love and cheer for Bex. Our t-shirt sales for IS research turned out to be a bigger success than we ever imagined. We sold out of two orders of shirts and were able to make a donation of $2350 in Bexley's name to go to IS research!! She is so lucky to have so many people on Team Bex! 
- ACTH Worked!: The more research I have done on IS, the more stories I have come across where families struggle to find a treatment option that works. One of the scariest things about the IS diagnosis was listening to the neurologist talk about how detrimental the hypsarrhythimia is to the brain. He talked a lot about how it is almost impossible for the brain to develop with those chaotic brain waves firing constantly. We are thankful every day that ACTH worked for Bex…..and worked quickly!! 

- Small Victories: One common theme that I have read most parents talk about when watching their child face developmental challenges is that the lows are lower, but the highs are higher. This statement is so true! Chris and I get the biggest high and celebrate the smallest steps forward in her development. Whether it is saying “ba” for the first time or grabbing and chewing the church bulletin, those moments bring a smile to my face and sometimes tears to my eyes because I am so thankful that she continues to make progress!

This year has not gone as I had planned, which is hard, especially when you are a planner like I am. If someone would have told me all that was in store for us this year (the brain abnormality, missed milestones, physical therapy, and IS), I would have said I couldn’t handle any of it and wanted to give up before we even started. However, I would have missed out on all the truly wonderful things that have happened this year and all the joy that Bexley brings to our lives. So I think the biggest lesson I have learned is that no matter what happens, we will figure out a way to handle it. We have handled and faced challenges this year that I would have thought a year ago we would not be able to handle, so I know going forward we will figure out a way to take on any other challenges that may come our way. So now, when my mind starts to wander with worry or we start to get nervous about what a doctor will say, we remind ourselves of this and it helps.

Happy 1st Birthday, Bexley!! We are so blessed to be your parents!! Thank you for all the smiles and giggles that brighten all of our days!! We are so proud of all you have overcome and accomplished this year!! 

Monday, October 13, 2014

Neurologist Appointments Come and Go...

Bexley had her 2 month follow up with Neurology and it actually went well overall.  It was probably the best neurology appointment we’ve ever had regarding his assessment.  To sum up the content that was discussed on his end…

He was very happy with her social development since the last time we were there.  Right away he noted that she was very attentive to his presence and tracking everyone as we discussed her status.  As Lindsey and I went through Bex’s past several months, he was pleased with all of the progress.  He upped her dosage of Topamax, which was expected, and told us we wouldn’t have to be back for another 4 months.

Here is the part that was interesting.   He kind of surprised us by giving us the results of her genetic testing today.  The good news is that one of the urine tests that was initially run when she was a month old and always came back weird...came back completely normal this time, so we are happy about that. The Epilepsy Panel came back inconclusive at this point.  There was a variation on one of her genes, which could mean something or could mean nothing.  We had to follow up with Genetics to see what they recommended.  

Lindsey called to talk to the genetic counselor later today to get a little more clarification on these results.  The counselor explained that in order to have the disorder associated with this gene...Bex would have to have two mutations, thankfully, she has none.  However, since she does have a variance on this gene, there are additional blood and urine tests that they want to run to explore if they can figure out any more about what the variance on this gene might mean. We are going to take her in tomorrow morning to get her blood drawn (again) and give another urine sample.  Those results should be back in about 2-4 weeks.  Anyways, the genetic information is all kind of confusing, but I guess the good news is that at this point, it didn't come back with a conclusive diagnosis.

I do want to say that there was one part today that made my day.  When the neurologist explained the genetic testing, I, of course, had to ask questions regarding the variance.  As I was asking them, Bex was sitting on Lindsey’s lap next to me and reached out to me and smiled.  I bent over and let her touch my face and she smiled bigger.  This may sound impractical, but it was almost like she was trying to tell me something.  I’d like to think she wanted to say, “You don’t have to worry about this stuff, Dad.  No matter what, we will figure it out and I’ll be okay.”  I actually got a bit choked up when she was doing that.  Maybe it was nothing and just a silly thought in my head, but it was one bright spot that helped make it a better day.

Donuts with Daddy!

Thursday, October 2, 2014

One Less Thing to Worry About!!

On Tuesday, we had Bex’s appointment with the orthopedic doctor.  The doctor was very friendly and upbeat. When we started going over Bex’s history and why we were referred to see her, she actually started laughing when we explained why we had been referred to see her.  She then went on to explain that all babies have a curve in their spine until they gain control of their trunk muscles. After examining Bex, she felt there was no need to run x-rays because any curve she has in her spine is to be expected based on her current gross motor abilities. She said she would be happy to see us again in the future if we have any other concerns, but at this point, she sees no need for us to follow-up with her. 

It was a refreshing change of pace to leave a doctor’s office feeling optimistic for once! It was the first time we have left an appointment in awhile and been able to cross something off our list of worries instead of adding to it.  We plan to savor this victory until our next doctor’s appointment on October 13th with neurology.