Belated update

Brooklyn is doing well these days. We recently had an eye appointment down at Primary Children's and it went well.

At this point, Brooklyn says some words and says hi to everyone. Jenny has been good to get her going on sign language and Brooklyn seems more open to learning new words through sign language than voicing new words.

As for interests, she continues to love people and is very social. She also loves carrying around a doll, a bag, and a toy phone. She is good with her hands and is walking pretty well, although we're planning to get her some braces to straighten our her feet while she walks.

Long story short, she is happy and healthy and we have much to be grateful for. Here's are some quick pictures:

At the annual pumpkin walk in North Logan

Holding her new cousin Sadie!

Using a cookie cutter for unintended purposes....

Stepping up!

Brooklyn has gained some confidence and is now taking more steps during many of her walks. This is so exciting and we are grateful for her progress as she continues to be a joy each day. I just can't imagine life without her sweet presence here with us! These videos were taken about 11 days apart - the first one is her first real day of walking and the latter is from today.

Standing Tall!!!!

Brooklyn has begun standing on her own. We are all so proud of her and hope that she will begin walking sometime soon. Here is a quick video of her standing a couple of times that I think you'll enjoy...there's even a small step in there...

Walking?

Brooklyn continues to make progress over time. We were excited that she took her first step today! (to her brother Collin) and then took a few more to her dad. She has been using her walker some, and does pretty well walking along couches or other structures. She also does just fine walking while holding someone's hand.

She is also able to understand a lot of things, including looking around for people that she is asked about. She has not lost her enthusiasm for people (HI! to so many new faces she encounters), says mama and a few other words (I'm pretty confident she even said Gra Ma Ma after talking on speaker phone with Grandma Young). She is very good at getting what she wants and is able to go down stairs very well, and even does pretty well going up them too. Her peek-a-boo is flat out adorable and she has NO personal space issues (she is very comfortable putting her face right next to another person's).

It was two years ago this week that she received her current shunt, and words can't express how nice it is that she has not had to have a surgery in some time.

In short, life has become pretty normal for her and we are grateful for the joy she brings into our life. So much has happened over the past two years, with so much to be grateful for.

Long-overdue Update

I apologize that I have not posted any updates on Brooklyn for the past months. While I do not have a lot of time, I will say that she now has an interest in walking and received a walker yesterday that should help her progress. When Jenny sent me the picture below it was enough to get me to finally put up a new post!! I will look to post a more in-depth post soon. Enjoy!

Little Scooter

Brooklyn has begun to scoot around rather than crawl. She moves much faster and we are so proud of her.  Here is a video of her getting around.

She has not had any seizures of late and she continues to do a nice job interacting with others. She does not yet speak at this time, other than an occasional version of dadda or mamma, but we are hopeful.

Here's also one of her standing...

We continually hear of so many who are experiencing health challenges in their families. It seems as though these are very common in these current days and our prayers and thoughts will be with those who are going through these trials, including their family members.

Swinging along

I recently introduced Brooklyn to our swing set....I think she likes it.

Also, here are some more of the thoughts I wrote down before Brooklyn was born:

September 8, 2013

We had a great day at church today.  The Jossie family spoke about grace and agency and did a wonderful job.  We are certainly in need of the Savior’s grace at this time. 

In priesthood, one of the high priests gave the lesson and it centered on priesthood blessings, including an experience where President Snow was opening the work in Italy and gave a blessing to a little boy there who was healed and that helped lead to opening the work successfully there.  There was then a short DVD about his grandson, Elder Schenk (sp?) who had tragically been hit by a bus during his mission to Brazil.  The video showed his miraculous progress through this difficult time of physical healing and speech/motor skill re-learning and this boy then stood and testified of priesthood blessings....

I also had a realization that it could be Heavenly Father’s will that she come home early or have a tough mortal experience to ensure she receives exaltation.  So many  possibilities, but I know He is in charge, and that is what matters.

I also love this quote from President Packer, which I read in an Ensign article today:

“Faith, to be faith, must center around something that is not known. Faith, to be faith, must go beyond that for which there is confirming evidence. Faith, to be faith, must go into the unknown. Faith, to be faith, must walk to the edge of the light, and then a few steps into the darkness.”

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!

Updated schedule

It turns out that only one surgery will happen in early December (the eye surgery) and the second surgery will occur closer to mid-December (the one to address the issue at the crown of her head). Brooklyn continues with her patch therapy and other activities.

We are looking forward to Brooklyn's first Thanksgiving tomorrow. Clearly we all have much to be thankful for at this time, including our trials that help us to grow.  I am particularly grateful for our Savior Jesus Christ, who helps us through these trials because He loves us.  He is also intimately familiar with all of our trials, as he experienced them through His atonement (Alma 7:11).  I also want to acknowledge a loving Heavenly Father who is willing to answer our prayers and concerns through the Holy Ghost.  Finally, I want to express gratitude for family and friends who are always there to consult with, comfort, laugh, and just hang out with.  I am so glad that we aren't just sent off to separate islands to live out our days but instead have family, friends, and others that we can interact with, learn from, serve, and grow with in this life.

Here are some of the thoughts I had in the past...again, at a time before Brooklyn was born.  It is neat to see how far things have come since these thoughts were recorded:

August 25, 2013

Today was our family fast for our sweet little one.  I was able to feel the spirit again during the sacrament and the sacrament took on additional meaning to me.  I’ve always believed in the resurrection, but if it turns out that we don’t get to raise our little girl or that she has severe physical challenges, the doctrine of the resurrection becomes even sweeter.  I love the Gospel and am so grateful that our Heavenly Father has revealed so much of it to us, particularly with regards to the hope it provides even if this life is difficult for a time.

My sweet family fasted for our little daughter today.  Aunt Bonnie and Uncle Leon also joined in the fast and sent a sweet text message:

":It has been a wonderful day. We enjoyed our day of fasting and prayed that your little daughter would enjoy all that Heavenly Father has planned for her life and mission as a member of this family. We love her so much all ready.”

Steve also wrote us a nice email today expressing his support...

“Jenny and Chad - Mom called and told us about your sweet baby... [I] wanted to reach out and send our love.  One of the greatest benefits of family is the strength it provides when challenges arise.  While I am sure this beautiful child will be one of the most precious blessings of your mortal life, it sounds like the future is somewhat unknown, which I'm sure is a challenge.  Please know that we are here and praying for your family to have strength, guidance and understanding, and so willing and ready to drop everything and come running to help with whatever you may need over the coming months.We love you. Steve and Barbie”

Needless to say, we have felt a great sense of support. 

I continue to admire Jenny throughout this process.  She is unshakable.  Not that she hasn’t cried or had concerns, but she continues to look forward with faith and I’ve found myself drawing strength from her example.  I’m so grateful to have her to go through life with.

The talks in church were helpful today.  The Sneddons spoke as they prepare to leave for the Congo.  Sister Sneddon talked about reaching out to the one. Brother Sneddon recounted a time when Sister Sneddon asked him to pray about whether they would continue to grow their family.  He related that when he prayed about this, he was told that he was asking the wrong question and that instead he should be praying for strength and vitality.  That hit home with me.  I know that Heavenly Father communicated, through the Holy Ghost, which was unmistakable, that we were supposed to have another little baby.  Now, like brother Sneddon, I know that we need to pray for strength and vitality – in other words, not ask that any mountains be removed (unless that be the Lord’s will) but that we can strength to climb the mountains before us.

I will continue to pray for a miracle….that our daughter can be as healthy as possible.  As it states in Luke 22:42:

“Saying, Father, if thou be willing, ^aremove this cup from me: nevertheless not my ^bwill, but thine, be done.”

We will still pray for a miracle, if God be willing.  Nevertheless, not our will, but His be done.  We will continue to trust in Him, knowing that He knows best.

Update on upcoming events

Jenny and I had a nice visit with the neurosurgeon at Primary Children's this week.  In the end, it sounds like Brooklyn may have surgery soon to fix the source of the spot on the crown of her head that causes her pain.  Basically, it appears spinal/brain fluid is leaking somehow to that spot and building up.  She gets some crusting on the skin outside of that spot, which could be dried spinal/brain fluid and does present some risk of a potential infection entrance.  So, assuming the surgery occurs, they will open up that spot and stop the leak.  It is a possibility that she'll get that surgery done on the same day as her eye surgery in early December, but we'll have to just wait and see.

Thanks for all the continued support for Brooklyn.  She is doing so well and I can't believe we're almost to her first birthday.  She is just awesome and we are looking to enjoying this holiday season with her and our immediate and extended family.

A letter from a brother

Our son Grant had to write a letter for a scout requirement and chose to write it to Brooklyn.  After some pleading he agreed to let me post it on the blog...

Dear Brooklyn,

                You are awesome. You are super cute. You are good at sitting up. I like your sweater. I like to play with you.

Love,

Grant 

Cruising along

Brooklyn continues to do well in many areas.  She is strong, happy, and very excited to interact with others.  For whatever reason she adores her daddy (just ask her mommy) but is generally excited to meet all of mankind.

Of late she is sitting up so well on her own, to the point that we don't necessarily have to be by her when she is sitting up (although we still like to be).  She is also starting to reach and is able to look for things when we hide them.  She has big cheeks, a full head of hair, and a sweet, happiness-inducing disposition.

She has not had any seizures of late and we have gotten used to her somewhat calmer disposition now that she is on her medication.  We are grateful to not have had any more seizure episodes.  She is also wearing her patch on a regular basis in preparation for her upcoming eye surgery in December.

We could not be happier with her and the influence she has on our entire family.  With this holiday season approaching, we are grateful for so much of miracles, kindness, and charity that we have been the recipients of in the past year.  And strangely, I'm not sure how much we would change about our experience this past year - good or tough.  Without the tough we would not have learned as much.  Without the good it would be more difficult to make it through those tough days.

Here are some more thoughts within that first week of when we found out about Brooklyn's hydrocephalus:

August 23, 2013

Today was productive at work…with school starting next week I was grateful for that.  I also had a moment again where I felt a rush of peace as I was looking into the mirror. 

...

Jenny is doing well.  I was a bit down today and she just stayed positive and picked me up – even got me a glass of milk and let me lay down for a bit.  I am blessed to have her in my life.  She makes me so happy and I am grateful for the wondrous blessings that come from my marriage to her.

August 24, 2013

From Elder Andersen’s April 2013 talk “It’s a Miracle”

"As Jesus promised, signs and miracles were following the faith of the believers."

"Our day is a remarkable time of miracles."

"I like the story of Andrew, who asked, “Master, where dwellest thou?” Jesus could have responded with the location of where He lived. But instead He said to Andrew, “Come and see.” I like to think that the Savior was saying, “Come and see not only where I live but how I live. Come and see who I am. Come and feel the Spirit.”"

Today I was able to talk with my friend **** from my mission.  [He] has always been so good to me , a true friend.  His son **** has the same affliction our little girl is facing and also has other challenges.  I admire the way **** and his sweet wife **** have raised and loved [their son] and I imagine I'll draw added strength from them in the days and years to come.  It was just nice to talk with **** today.  He also shared some insights about the doctors who will likely put the little shunt in our baby's head when she is born and said that those doctors are wonderful and good men.  This will also bring an added measure of peace when we meet them.

My family is fasting for our little girl today and I am as well.  I am again grateful for the good men that my brothers are and the wonderful parents I've been blessed with.  Jenny's mom has also been staying with us the last couple of days and brought such a peace and stability with her.  I've always admired her and appreciated her influence on me and my family.  She is truly an angel to so many and I think of her as just as loyal as Ruth and Ester of old.

I'm grateful that the Lord has given us means such as prayer and fasting to demonstrate our trust in Him.  He is so good to us and I hope we can teach our little girl effectively about Him and His love for her.  I'm also grateful at this time for the health of our children who are already with us.  Whether it's their little smiles, ability to kick a ball or throw and play catch, or just their ability to get bumps and bruises  I am grateful for them and the blessing they've been to Jenny and me.

A Patch and an update

Jenny took Brooklyn down for an appointment with the eye doctor at Primary Children's Medical Center on Monday.  Fortunately her eyesight is great. Unfortunately her eyes are not lining up like they should and so she will need a patch about 8 hours a day until she has surgery in early December.  She does not complain and we are grateful that she continues to do well.  Here is a picture of our happy girl...

Also, here are some of my thoughts from a couple of days after we learned about Brooklyn's condition during the ultrasound when Jenny was pregnant:

August 22, 2013

Today has been less emotional.  I’m trying to be honest in putting my thoughts, feelings, and experiences down here and so I’ve been thinking about things like cost after insurance coverage and things of that nature.  I am grateful for insurance at this time and that such vehicles have been established to make things like this more manageable.

I had a neat experience hometeaching...tonight...and the 1^st Presidency message this month was just perfect...especially for me given the events of the last two days.  In particular, the following from President Eyring was helpful:

“The Holy Ghost brings back memories of what God has taught us. And one of the ways God teaches us is with His blessings; and so, if we choose to exercise faith, the Holy Ghost will bring God’s kindnesses to our remembrance.”

Importantly, Jenny was having trouble sleeping last night.  She asked for another Priesthood blessing, which I was voice of.  That was a great experience to be a part of.  During the blessing, she was specifically told to count her blessings when she was having trouble sleeping and that this would bring her closer to her Heavenly Father and more peace.  I also remember her being told that some of her ancestors would comfort her during difficult times and I particularly thought of her Grandma Hendrickson whom I have read about.  She was one who had many trials as well and would certainly be one who could give comfort.

I also remember seeing at different times today, people with physical challenges.  One woman was in a wheelchair. Another had difficulty walking but managed.  I thought about how that could very well be our daughter someday and it is nice to see that others are able to manage despite challenges…I admire them more now than I did before.

I had a nice chat with Dad Young tonight.  He said something interesting.  Speaking about the miracle we’ll be praying for (a little girl that is as healthy as possible), he said something to the effect of “If that miracle doesn’t come, other miracles will come that will compensate for that miracle not coming to pass.”  That was very comforting to hear.  I am so grateful for wonderful in-laws that I admire and enjoy being around.

I should also note here that I felt strongly that we should have another baby and Jenny received a similar confirmation.  I’m not sure what God has had in store, but I know better now that He is aware of us and wants to help us through trials.  I’ve believed before but am now experiencing that he tailors our trials in such a way as to magnify the likelihood that we turn to Him and rely on Him, more than we would in the absence of these trials.  I am grateful to our little girl, therefore, who is going through so much to help her father on earth turn to his Father in Heaven, even before she is born.

She even has me writing in my journal! J

Delayed update

I apologize for the delay in updating Brooklyn's status.  Long story short, Brooklyn's MRI suggests no noticeable issues, which we are grateful for.  Sunday's seizure lasted a lot longer than the first one, which was concerning.  The paramedics who came to our home explained that as long as it is not interrupting her breathing it should not cause any further damage.  Nevertheless, the ER doctor looked at the MRI and talked with a neurologist at Primary Children's hospital.  The neurologist decided to start her on some medicine to prevent further seizures, so Brooklyn will adapt to that and we hope the side effects are minimal.

We were so impressed with the care we received here in Logan and we are happy she has some medicine to (hopefully) prevent future seizures.  The ER doctor commented on how calm Jenny was and said something to the effect that she could be involved in the medical profession, which I wholeheartedly agreed with.

We also received so much help from our neighbors.  I was actually in Salt Lake with Katelyn when the seizure occurred and received a text from a good neighbor telling me what was going on.  He also took my call and kept me informed.  Brooklyn also received a blessing and our neighbors took care of the kids while Jenny went to the hospital. One of these neighbors drove her there and a different neighbor came to keep Jenny company until I arrived (she then took Katelyn back to be with the other kids).  All in all, we again feel so fortunate to be surrounded by kind, charitable, selfless individuals who are always willing to extend a hand of friendship.

Brooklyn is a warrior.  She is so strong and so cute and so good.  She is still smiling and happy even as it appears that the medicine is affecting her a bit.  We are grateful for her and the happiness she brings to all of us.  What a beautiful child we have been given.

Here are a couple of pictures (at the hospital and back home):