2015: Trending in the Right Direction

I know it’s been a while since Lindsey and I have provided an update on Bex, so here we go!

15 month Check Up:

Bex had her 15 month check up with the pediatrician today (which also required some shots).  As you are aware, Lindsey and I usually dread these appointments because we always seem to get some sort of “blah” news or another item to worry about.  However, this time it went relatively well!  She gained weight, grew in height, and her head circumference got bigger.  While there were some small fluctuations within the percentiles, everything looked to be trending in the right direction.  This was also the first time we left a well child check-up without a referral to a specialist in 9 months…woohoo! Our Pediatrician was pleased and so were we!

Bexley is learning new tricks:

Of course, our Pediatrician asked how Bexley was doing from a developmental standpoint.  We relayed that she is making strides with her physical therapy and she is also learning to mimic more.  While visiting my family recently in Houston, we taught her to blow kisses (sort of).  Our Bexley continues to make moves at her own pace and we are very proud of her!

Connecting with Others:

Lindsey and I have recently been able to connect with parents who have a child that also experienced Infantile Spasms.  Lindsey has been communicating with a mother living in a different state via email and I spoke with a father last week.  To say my conversation with this dad was beneficial would be an understatement.  First of all, he was a great guy and I really appreciated him taking the time to chat.  Being able to talk to him about his experiences with IS and his child’s development going forward was very helpful.  This was the first time I have been able to share my concerns and fears with someone who has “walked in my shoes” so to speak.

The best part was this conversation was…natural.  Let me explain what I mean by that.  Lindsey and I can struggle to relate to fellow parents at times because our experience with parenthood so far has been different from the norm.   This is not a knock on other families, it’s just the truth.  However, when I was talking with this dad, every time he shared an experience with his child I was like, “Yes, we did the same” or “Bex went through that too” or “We used the same medication.”  During that conversation I felt like a regular parent, just shooting the ‘you know’ with a fellow dad.  I can’t tell you how happy I felt in that moment.  We are hoping to meet with this family in person in the near future.

Great Advice:

 I’m paraphrasing here, but the fellow dad gave me one really great piece of advice - “Don’t worry about the future.  You don’t know what will happen…just enjoy the now.”  This goes along with resolution #4 from the last blog post.  I did have a moment of weakness with this resolution.  We recently visited my family in Houston.  At the airport on the way back, I noticed an older family whose adult son had special needs.  He needed his parents’ help with ordering food and other basic life skills.  For a moment, I had that quick fearful feeling – will this be Lindsey and I with Bex in the future?  But then, I took a deep breath and I remembered what that father told me and our resolution.  Then I looked at my daughter, picked her up, and told her I loved her and would take care of her no matter what.  Also, I reminded myself that the family and son looked really happy…so I would be lucky if we turned out like them.

By the way…

In case you missed it, Lindsey and Bex were featured on the website “The Mighty.”  If you want to check it out, click here.

Happy New Year!!!

This post isn’t necessarily an update on Bexley.  Lindsey and I wanted to share our New Year’s resolutions that have come to fruition through the challenges we faced with Bex in 2014.  Part of the reason we started this blog was to share our experiences with the hopes they could help out other parents who are facing similar obstacles.

Resolution #1: Be Flexible.  We all tend to make goals for the New Year, whether it be a target weight, a career goal, or a lifestyle change.  We put it on paper and we shoot to hit it and many times we don’t.  A big reason for that is because we try to stick to that exact goal, even if it isn’t entirely realistic.  We learned with Bex and her IFSP (Individualized Family Service Plan or IEP for babies) that you have to be flexible with your objectives.  For example, we had the goal of “sitting up by herself” for Bex to reach by the end of the year.  She didn’t meet that goal.  She isn’t physically ready for that milestone yet…and that is okay.  We have learned what she is capable of now and we work to challenge her to continue to make progress.  We celebrate her victories and progress, but there are no timelines or expectations about what she will accomplish in the next year or by when.  There is nothing more frustrating than failing to meet a goal.  This isn’t cheating either, its being realistic.

Resolution #2:  Don’t sweat the small stuff!  2014 was a challenging year from a personal standpoint and also with my job.  Not that I was in a bad place with my career or company, I just was dealing with a lot of extra responsibilities.  Let’s just say I was probably averaging 60-70 hour work weeks easily, with some stressful situations.  The funny thing is I realized I lost sleep over things I couldn’t control and that were microscopic in the grand scheme of life.  We also dealt with serious water damage to our house and a total revamp of our bottom floor earlier in the year.  This led to a lot of stressful situations that in the end were laughable compared to what we went through with Bexley.  The house all came together, a job is a job, and most importantly we were able to get through the most difficult thing we have ever experienced with all of the medical issues with Bex.  We have a happy baby girl, so why sweat the small stuff?

Resolution #3:  At the end of each day, find two positives or two things to be thankful for. It is easy to get caught up in the daily routines without really “stopping to smell the roses.” Some days it can be easy to let worry or frustration with the hand that we have been dealt overshadow all the blessings in our life. Therefore, Lindsey and I would like to make the effort to end each day by identifying two things that we feel thankful for, so that we continue to remind ourselves daily that even on the tough days, there is a lot of good.  

Resolution #4: I owe this one to the great Scarlett O’Hara who delivered one of the best movie lines ever – “I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.”  With everything we have experienced with Bex, we can’t help but wonder what the future holds for her.  A lot of the things that you assume your child will do are called into question when you are given diagnoses like abnormal brain MRIs and Infantile Spasms. Will she walk?  Will she talk?  Will she go to school?  If she does, what type of school?  Will she learn to read and write? Will she be bullied?  What happens when she becomes an adult?  What if this or what if that…all constant worries.  Sure, these are similar concerns for every parent, but they are on a different level when you are a parent of a child dealing with developmental delays and that is the truth. What we have learned is there is no point to stress over these things today or else we will make ourselves sick.  More importantly, we will miss out on all the good stuff that happens (hence, the point of resolution #3).  With Bexley there are a lot of good moments every day and many more to come…so why focus on the “what ifs.”  Frankly my dear, I don’t give a damn about the “what ifs” anymore.  Sorry I couldn’t resist.  By the way, how good is Gone With the Wind…right?

Happy New Year to all! Thank you for following Bex and all of your support.  2015 is going to be a great year and we look forward to sharing our moments with you!

No Zebras here!

We had a productive week with Miss Bexley.  The first order of business was a visit to the pediatric dentist.  If you remember from our last blog post, our pediatrician made the recommendation that Bex should see a dentist because she still doesn't have any teeth.  At first I was a little annoyed about this, because I figured we still had some time before we should be too concerned about the lack of teeth.  However, I can understand with Bex's history that he would refer us to someone.

Yet, as expected, the hoofbeats were horses and not zebras.  The dentist showed us Bex's gums and told us there were a bunch of teeth willing and ready to come out.  So for now we just have to continue to play the waiting game until those pearly whites make their appearance.

That was a nice win in our book and there were two more as well!  Bex has started saying "ma ma" consistently.  While she is not necessarily correlating it with Lindsey, the fact that it is moving into the babbling stage of speech is promising.  This is important because Topomax (her seizure medication) can delay speech.  So she's moving in the right direction even with the hurdle of a medication side effect to overcome!  Now I just have to bribe Bex to start saying "da da."

The other HUGE win for Bex was that she turned over from her back to her stomach!!!  We have been waiting for her to do this consistently and she did it 5 times today!  She even did it for her Buela (grandma) on FT...so performing in front of a crowd.  It was actually a nice surprise, because she didn't necessarily have the best physical therapy session yesterday.  She was a bit of a grouch to say the least..like her daddy when he doesn't get his coffee in the morning.  We couldn't be more proud of her.  Today was one of those days where Lindsey and I felt that all of the tough PT sessions or constant hours of work throughout the day with Bex are totally worth it.

I've said it before and I'll say it again...my baby girl will move mountains!!!

An Update From Team Bex

Bex is 13 months old today, which made Chris and I realize that it has been a month since we lasted posted an update on Bex.  Here is an update about what has been going on for Team Bex over the last month:

12-Month Well Baby Visit: After everything we have been through with Bex, Chris and I even dread the standard Well Baby check-ups. When they put her on the scale and she had only gained a few ounces since her 9-month check-up, my immediate reaction was to panic about what red flags this would send up. She did grow in height and head circumference, so those were all positives.  Surprisingly, the pediatrician was not too concerned about her lack of weight gain. Bex did gain a decent amount of weight on ACTH (2 pounds in the first week), so it seems that her body is just starting to balance back out and her weight is back into the “pre-ACTH” percentile. While Bex is showing a lot of signs that she is starting to cut teeth, she does not have any teeth yet. Since she is one and does not have teeth, we have to make an appointment with a pediatric dentist for her to get x-rays to make sure there are baby teeth under the gums. Chris and I have often speculated that ACTH may have stalled or delayed the teething process for her, but it has been recommended that we see a dentist to make sure that is the case and to confirm there is not something else going on.  

Genetics: As you may remember, the results to the Genetic Epilepsy Panel came back with one gene that had a variant of unknown significance.  Since genetics is such a new and evolving field, it can be confusing at times. Our best understanding is that a variant of unknown significance is different from the norm; however, at this point, genetics does not have an understanding about what that variant means. As research progresses, it could be determined that this variant means absolutely nothing or additional research could help provide insight into what this variant means about prognosis. Anyways, genetics had required Bex to have an additional urine test done due to the variant. We got those results last week and they all came back within the normal range. Yay! Thankfully, there are no additional tests that they want to run at this point. We will follow-up with genetics again in May to discuss Bex’s development and determine where we go from there. 

NC Epilepsy Foundation: Last Tuesday, Chris, Bexley, and I met with the Chair of the NC Epilepsy Foundation, Pat Gibson. This was the Foundation where we donated the funds from our Team Bex fundraiser. Pat Gibson participated in some of the first IS Conferences back in the 80s.  This was the first time that Chris and I actually had the chance to sit down and talk with someone who is knowledgeable about IS as well as compassionate to some of the challenges that we faced at diagnosis and continue to face with Bexley moving forward. It was a really great meeting.  We are excited about some of the things they plan to do with the money we donated and we hope to stay involved in helping to raise awareness and provide support to other newly diagnosed families. She is also hopefully going to try to hook us up with some families in the area, who are facing similar situations.  We are keeping our fingers crossed that this will work out because it would be nice to develop a support network of families who understand what it is like to juggle doctor’s appointments, remember to fit therapy into your daily routines as much as possible, and live with some of the unknowns about the future. 

 

As long as we don’t have any unforeseen circumstances pop up, we should have a break from doctor’s appointments until February. Hopefully, that will be the case because Chris and I always like it best when we can stay in our “Bex Bubble” without any doctor’s bursting it.

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!! 

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!

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 13^th with neurology.