Plugging along

Often times when I talk to a colleague over the phone or run into someone I have not seen in a while, I get asked how Brooklyn is doing.  Of late, no matter what else is in my response, I say something to the effect that she is happy or doing well.  And she is.  She rarely has a moment of sadness.  And when she does, those moments don't tend to last long.  If she is left alone for a few minutes while we get some things done, she is pretty content and quiet.  But when we get back to her, she lights up and smiles.  If there was a statistic for +/- in the amount of happiness/sadness one person brings to the earth (like the NBA uses when a player is on the floor and his team's score goes up or down), Brooky would have a large + statistic.  

As for her medical updates, she did have a blood test done a couple of times to look at the levels of medication in her blood.  Although they were a bit high, the doctors have encouraged us to keep her current (higher) dose in place so that we can (hopefully) avoid seizures as much as possible.  

She has also begun to do a crawling exercise that is beyond incredible and cute.  Here is a video we recently took:

Update

Unfortunately the neurologist had to call in sick when we had our scheduled appointment this week.  So we have not yet met with the doctor to see what our next steps will be.  It could be that we'll just stick with the current levels of meds and see how she does.

Overall Brooklyn is doing fine.  She is a happy little girl and seems to be adjusting to the new level of meds just fine.  We'll just continue to hope that the frequency of these seizures remains low.

Another seizure :(

Brooklyn had her first seizure since she began her anti-seizure medication.  Jenny had put her down to sleep as Brooklyn seemed tired.  When she checked on her later she was seizing.  Jenny handled it so well, despite some inconvenient circumstances.  This was the first time that Jenny had to administer the medicine to stop a seizure and she did great.  I think she was expecting the medicine to stop the seizure immediately, but we now know it takes 5-10 minutes to take effect.  The seizure did eventually stop after this medicine was given.

Unfortunately, I was gone with our only available car to Collin's basketball game.  As a result, Jenny had no car because our van is in the shop awaiting a transmission change.   I had all of our other kids with me and Jenny was able to call a friend from our ward and borrow her car to drive Brooklyn to the hospital. After checking Brooklyn out, they had some blood drawn to check her levels of medication.  This will help when we meet with the neurologist next week.  The sweet woman from the NICU did a great job drawing the blood, which was much appreciated given that Brooklyn can be tough to draw blood from.

Our ER doctor spoke with the on-call neurologist at Primary Children's and was told that we should increase Brooklyn's current dose of medicine, which we'll begin in the morning.  All in all, I guess the best we can do is be grateful for modern medicine and miracles.

Thanks again to all who have prayed so long for our sweet little girl. She began clapping in the past week and continues to be happy.

Visit to salt lake

We had a nice visit to Salt Lake on Wednesday. We met with 2 members of the neurosurgery team at Primary Children's, including the doctor who performed Brooklyn's surgery last month.

Overall it appears Brooklyn is doing very well. The doctors were not really concerned about Brooklyn's tendency to rest her head on the floor and believe the shunt is working well.  This was comforting and we will not need to go back for her checkup for 6 months unless something comes up.

Thanks so much to all who continue to be concerned for Brooklyn. We appreciate ask the support she receives.

A concern and some thoughts

We are a bit concerned of late that Brooklyn's head might be getting heavier.  Of late she has been, on occasion, bending over while sitting up such that she is still sitting but her forehead is all the way to the ground.  Wish we could all be this flexible, but we think this might be a sign that her neck is getting tired and needs a quick rest.  There are some other minor signs too that have caused us some concern that the shunt might not be working properly.  We've called down to Primary Children's and they'll let us know when to come down to look into this further.  We already have an appointment scheduled for later this month, but we hope to get in to see our surgeon sooner.

I should note that her last surgery (on the crown of her head) appears to have been successful in alleviating the pressure/pain Brooklyn would experience when it was touched before the surgery.  We are so grateful for this as we do not have to be quite as concerned about laying her flat.  She also appears to have avoided any infection on her sizable scar, which is a great blessing.

So, overall things are looking ok.  While we hope her shunt is working, we'd like to know sooner rather than later if it is not so that we can address any issues that might be in play.

Here are some videos from her 1st birthday...Enjoy.

Finally, here are a few more of the thoughts I wrote down in the days after we had found out about Brooklyn's condition but before she was born:

August 26, 2013

Yet again I feel some peace today and yet again I encounter someone else who knows someone who has our little one’s condition.  [...], my old teacher’s quorum advisor, was at his father’s house today ... They were irrigating his father’s lawn and I stopped and spoke to [him].  He mentioned that he knew someone whose daughter had hydrocephalus...who the doctors said would not have much of a life but has had a miraculously functional life.  Again, this tells me that, if it be our Heavenly Father’s will, our little girl can find a productive and happy life. 

We also had our neighborhood party tonight.  The [....] family again cooked the meat, they are so kind and generous with their time.  I admire them and their marriage so much….always with smiles on their faces.  Same with the [...] who are always serving and supporting one another as the other serves. 

Life is good and grand. 

I begin teaching tomorrow, which I am looking forward to. 

August 29, 2013

Teaching has gone well so far and it has been nice to be busy...

I had a nice talk with Alison the other day.  It is nice to have her medical expertise in the family.  She was reassuring and uplifting and I was grateful for her time.  I also spoke with [my "boss"]today to explain what we are facing.  He was so supportive and said the department would be fully supportive in any way possible.  As I look around me at family, friends, and co-workers (who are also friends), I realize how blessed I am to be associated with good people in this life.  [He] was so kind with his words of encouragement.  He talked about how we’ll love this little girl, perhaps in new ways we have not yet experienced.  I agree with that thought and look forward to having her in our arms in December.

I came across the following when studying hope the other day:

“The word hope is sometimes misunderstood. In our everyday language, the word often has a hint of uncertainty. For example, we may say that we hope for a change in the weather or a visit from a friend. In the language of the gospel, however, the word hope is sure, unwavering, and active. 

"Prophets speak of having a “firm hope” (Alma 34:41) and a “lively hope” (1 Peter 1:3).” 

-True to the Faith lds.org

What a profound teaching – hope being a certainty.  I can see how this is when I know that I have received revelation from Heavenly Father through the Holy Ghost that has brought peace, or, in other words, a sureness of hope that things will be ok.

I love this Gospel.  

Merry Christmas and another surgery update

Brooklyn had her second surgery of the month on 12/18. It was to close off a portion of dura that was poking out and we hope this will relieve some pressure that caused her pain whenever the crown of her head was touched.

According to the neurosurgeon the surgery went well. We are very grateful for this. Brooklyn and Jenny stayed the night in Salt Lake City while I came home to Logan to hear or daughter Katelyn perform a piano piece at the Logan tabernacle.

We then came home on the 19th and have taken some time to rest so that Brooklyn's head can heal properly. The biggest risk post surgery is infection. And so we will keep a close eye on that.

We were a bit shocked to see the size of the incision that done during the surgery. However we are grateful that it went well and time will allow her hair to cover everything up :-)

I'll include a picture of her scar.

Brooklyn had a wonderful Christmas at home with our family. She got some fun toys including a dog and some things that she can play with using her little hands. She is a big fan of the Fruit Loops and the candy that I shared from my stocking!

Look Who's 1!!! (And some updates)

Brooklyn had a wonderful first birthday on 12/10/14.  She received some fun gifts, the highlight being a Monkey toy (you can see it HERE, including a video), some new pacifiers (which always magically disappear in our home), a doll, etc. The highlight for everyone, including Brooklyn, was her first piece of cake.  Here are before and after pictures (I do want to note that we DID NOT have her eat the whole thing, although in the second picture it looks like she has given the missing cake and "I'm stuffed" look on her face):

We have never had a child go after a piece of cake so excitedly as Brooklyn did.  I have some video from my phone that I'll post when I can make it work.  We feel so blessed that she is doing as well as she is.  Her demeanor is jovial, her happiness is calming, her courage is commendable, and her presence is hope-inducing.

Brooklyn had her eye surgery a week before her birthday (on 12/3/14).  According to the surgeon things went well. In the initial days following the surgery, we were concerned as the eyes were not lining up like we would hope, but of late they are looking much better!  That day Jenny actually tried to watch a YouTube version of a similar surgery - I did not want to see it. Jenny could have been a great doctor with her interest (and stomach) for such things.

Brooklyn's next (and hopefully last, for a while) surgery will come shortly.  I'll post an update after we see how it turns out.  Given her track record we are optimistic, and we are grateful for all the support during this time!