12.01.2010

Wordless Wednesday

I've never done a "Wordless Wednesday" before but, here it is...Leyla on her knees all by herself!

11.17.2010

LEYLA WON!!

Yay!  Leyla won the 2010 Halloween Costume Photo Contest for Feather Blue Studios!  No idea what she wins but, she won!  Thanks so much to everyone that took the time to vote!



On another note, Leyla had a speech therapy assessment yesterday and did really well!  Her verbal skills are pretty much where they should be, it's just her taking direction/ listening skills are low.  So, she'll now be going to speech therapy once a week. 

Oh, and...We received a letter in the mail last weekend from our Genetic Counselor.  The results of all of the genetic testing came back negative for the genes that are linked to Joubert's Syndrome.  We really have no idea what this means at all.  We'll just hang tight until April when we see the geneticist.

Have a great day!

Jenni

11.06.2010

Leyla is in the Top 3!

Last weekend I took Leyla to Java Train Cafe to be a part of a Mini Shoot done by Feather Blue Studios and it was also a costume contest!  Well, she made it into the top 3 finalists and now it's time to vote!! 

Go to: http://featherblue.blogspot.com/2010/11/halloween-costume-contest-finalists.html

And comment with your vote for Leyla!

You can also vote a second time on Facebook by going to Feather Blue and "liking" Leyla's pictures!


Thanks in advance for all of your votes!


Have a great weekend!

11.02.2010

Each Child is Unique

This is a post from Faith Minute, a Christian broadcast that is heard on several radio stations throughout MN.  Eric sent it to me last week and I haven't stopped thinking about it. 

There’s a proverb in the Bible that goes like this, “Train a child in the way he should go, and when he is old he will not turn from it.” Now, most of us think that means teaching our children to have faith in God and to be “good kids” so when they’re grown they’ll be good adults. But I think we’re missing an important point. A baby may have mama’s smile or daddy’s eyes, but that baby is more than a composite of their traits. From the moment of conception, God created the uniqueness of each child. Training our child “in the way he should go,” literally means identifying the special way God created that child and helping him or her in that direction.



Next time you’re asking God for wisdom on what to do with your child, remember to ask for wisdom in understanding his or her uniqueness.

I recently have had discussions with a few people about what it's like watching Leyla with other kids that are around her age or younger that are now starting to walk and even run...they're moving all over the place! While Leyla absolutely LOVES to be around the other kids and she gets so excited to see babies and other friends it honestly is heartbreaking to watch your child be the step stool/ leaning post for all the other kids to steady themselves because she can only sit there and she's a pretty calm little lady so, she doesn't really protest when the other kids use her to lean on. This post has been a really good reminder of how amazing Leyla is and how much we cherish and are so thankful for every little thing that she does even if she's not at the level that all of her friends are!  We praise God for every finger snap (if you've been around Leyla lately you know what I'm talking about), every "dancin, dancin, dancin," every time she finds her button or piggies, every "O" face, every tongue click, every small thing that others just expect their kids to do, we thank God.

Have a great day!
Jenni

11.01.2010

UPDATED: Happy Halloween!

Leyla was a Garden Gnome for Halloween this year!  Cutest Garden Gnome I've ever seen! 

9.23.2010

And....We're Rolling!

Whoop whoop!  Leyla rolled from her back to her belly for the first time last night!!!  Needless to say, I am a VERY proud mama!!!

Have a great day!

Jenni

9.21.2010

9.15.2010

So many new things!

Over the past week Leyla has been learning and doing so many new things it's just crazy!

 She learned the signs for "more" and "all done"
 She learned where her nose is!  Now she knows her nose, button & piggies!
 She started clicking her tongue like her Godmother Brenna did!
 She started trying to snap her fingers...she uses her pointer finger though!
 She stayed on her belly for 5 minutes with out crying or trying to roll over!

So many good things and loving every minute of it!

Have a great day!
Jenni

9.13.2010

Leyla's Surgery...5 Days Later

Sorry it took me so long to post about Leyla's surgery.  As far as we know right now it went really well.  When Dr. DeBecker got in to look at Leyla's eyes she found that the inside muscles were REALLY tight and ended up just weakening those instead of doing the whole move the top and bottom muscles to the outside of eye procedure, whew!  I'll be honest, I was pretty happy about that.  The thought of peeling the muscles away from the whites of her eyes and moving them just made my stomach turn.  Anyway, Leyla did great. All throughout the morning we had visitors in the waiting room, multiple nurses, all of the doctors, etc. commenting on how happy and smiley she was and how content she was...she is!  We were so blessed to have the happiest baby around! When the nurse came to get me after Leyla woke up she said, "we took the breathing tube out and she was smiling immediately!"  That's totally Leyla!

So, in addition to the surgery, Dr. DeBecker performed an electroretinogram, which I've talked about before, this was to test the functionality of her retinas and that looked great!  The MRI came back consistent with the one that she had back in June and then they took her blood to send off to have the genetic testing done.

Eric and I were both pretty worried about how Leyla would handle the pain after surgery and she was nothing but calm and easy going.  She slept for about 12 hours Wednesday night and then napped a lot on Thursday.  She did great!  I've posted some photos below so that you can see the progression of her healing already in just 5 days!
Hanging with Daddy in Pre-Op
She looked a little goofy with the dots above her eyes to make sure that the doctor operated on both eyes!


Just minutes after she woke up.  Not too happy.  : (

The Next Morning (Thursday)

Day 2 After Surgery (Friday)
Day 3 After Surgery (Saturday)

Day 4 After Surgery (Sunday)

Day 5 After Surgery (Monday)

Another fun thing happened this weekend/ last week!  Leyla learned the signs for "more" and "all done"!  We love it!  She may or may not actually know what she's saying but, when you tell her to do the sign she'll do it for you...well, most of the time.

That's all for now!  Enjoy this week!

Jenni

9.03.2010

Pre-Op

Yesterday we met with Leyla's ophthalmologist/ surgeon, Dr. DeBecker.  She explained to us how the procedure will go on Wednesday. 

Rather than weakening the inside muscles on Leyla's eyes, they will now be peeling the muscles from the top and bottom of her eyes and moving them to the outsides of the eyes.  They will then do a couple of Botox injections on the inside muscles, to relax them a bit while she heals.  It should take about 8 weeks after the surgery to see whether the surgery was fully successful or not.  There is a chance that she may need another surgery to weaken the inside muscles afterward but, we're hoping that isn't an issue!

Today we saw Dr. Rosenthal (Leyla's Pediatrician) for her Pre-Op physical, got the sign off!  We're good to go!  In about 3 1/2 hours we'll be on our way to the Worlds Largest Buffalo!  Does it get any better than that?!

Have a great weekend!

Jenni

9.02.2010

Mixed Feelings

T minus 6 days and counting until Leyla's eye surgery!  Yikes!  I have an overwhelming amount of mixed feelings happening about this surgery.  Obviously, as any mom would be, I'm scared to death about it!  I mean, I fully trust her doctors and I fully trust that the Lord will keep her safe and healthy during the procedures but, come on, they're operating on her eyes for goodness sake!  I have so many fears and what-ifs, what if it doesn't work, what if it makes her eyes worse, what if it makes her blind, I fear the pain that she'll be in afterward, I fear that she'll associate us to the pain that she feels, I fear having to put her through all of it again if it doesn't work...I could go on for days! 

On the other hand, though, I'm excited!  The hope is that Leyla's range of sight will increase from the surgery which in turn will (hopefully) help her to want to reach out for things that are off to her sides and eventually roll over!  There's also the obvious apperance part of it, we hope that Leyla's eyes will no longer be crossed and that she'll be able to pull her eyes to the outside rather than only being able to look with one eye or turn her head to see things that are off to the side of her. 

Other than the surgery, Leyla will have a couple other procedures done next Wednesday, the electroretinogram (ERG), another MRI and she'll have blood taken for the genetic testing.  I'm anxious to see the results of the ERG as that should give us some information as to what Leyla's eyes will do in the future.  She may be able to see really well right now but, will her retinas still have the same functionality 5 or even 10 years from now? 

We're meeting Dr. DeBecker today for Leyla's Pre-Op eye measurements and Dr. Rosenthal (Leyla's Peditrician) tomorrow for her Pre-Op physical then our little lady gets a few days to relax with her Grandma Dawn & Grandpa Jerry, her cousins Brayden & Carley (pictured below), aunties & uncles....AND She'll get to meet the Worlds Largest Buffalo all before heading back for physical therapy on Tuesday and the surgery on Wednesday!


Have a safe holiday weekend!

Jenni
**Note about the giveaways; you must leave a comment for each entry or you'll only be entered for the one that you leave.**

8.25.2010

Kidneys are looking good!

Good morning! 

We met with the kidney specialist (Dr. Rheault) yesterday and just got the call with results from Leyla's ultrasound and bloodwork.  Everything looks normal right now!  Yay! 

We'll know more about whether Leyla has one of the two genes that show up in kids with Joubert's that show kidney issues when we get the genetic testing results back in the spring.  So, for now, we just wait for that and go back for follow up with Dr. Rheault in a year.

Enjoy this beautiful day!

Jenni

8.23.2010

Blogger MIA

I've been a little MIA for the past few weeks.  Life has actually been a little quiet before the storm coming over the next 3 weeks leading up to Leyla's surgery.

Leyla has been doing really well!  She's starting to actually say "mama" rather than just a random "ma" here and there!  She's now on her 3rd week of Physical Therapy and is doing awesome!  She is starting to roll to her side which is just one step closer to her rolling all the way over! 

She will see the nephrologist tomorrow to find out about how her abdominal ultrasound looked and next week we move into the pre-op appointments for her surgery that will be on the 8th of September.

This weekend I walked in the Susan G. Komen Breast Cancer 3 Day, below is  a picture of me and Leyla at one of the cheer stations that Eric and Leyla came to visit us at!

I have some fun news for all of my awesome readers!  We've got GIVEAWAYS!!!  I have lined up some really awesome Etsy shops that are super excited to do some giveaways for my followers!  How fun is that?!

The first one will be posted one week from today!! Make sure to check back, become a follower and get entered to win!!

Have a blessed week!
Jenni


8.10.2010

Quick Update

Sheesh, it's been a while since I posted last! 

Last week we had two more appointments for Leyla; neither really gave us any more information.  Wednesday, she had an abdominal ultrasound that will be sent to the nephrologist for our appointment with him on the 24th of this month.  Obviously, the ultrasound tech wasn't able to give us any information as to what she saw or didn't see.  An abdominal ultrasound is so much less exciting than an abdominal ultrasound when you're pregnant!!  Eric and I both agreed that we had no idea what we were looking at! 

Then, on Friday, we had a physical therapy evaluation.  The therapist really didn't tell us anything that we didn't already know.  She tried to get Leyla to roll over, rotate while on her belly, pull up to sitting from laying....Leyla wanted nothing to do with it, she just clapped everytime she tried to get her to do something new.  My fear with physical therapy is that the therapist won't know about Joubert's and she'll expect Leyla to do things that are not realistic for her to be doing at this point.  I did ask the therapist whether or not she'd worked with any children with Joubert's in the past...nope.  We'll see how it goes...I may need some recommendations for PTs in the area that other Joubert families have used and liked.  Right now, we'll be doing PT once a week for 12 weeks and we'll see how that goes and re-evaluate.

On a more fun note...well, for me anyway...Friday, Leyla and I also went for a training walk with our friend Heather and her son/ Leyla's boyfriend Cohen! : )  The kiddos did great!  Below is a pic from our pit stop at the park!

Enjoy this stormy day!
Jenni

7.27.2010

Genetic Counseling

Back to the University of Minnesota today, we had our first meeting with the genetic counselors (Karol Rubin) that will follow Leyla and do the genetic testing on her...well, they're not doing the actual testing...her blood will be drawn at the time of her surgery and then sent off so some lab in Wisconsin to be tested and then she will give us the results.  The hope is that they'll be able to pinpoint the two non-working (of the 9 that are known to cause Joubert's) genes that Eric and I each passed to Leyla that caused her condition.  Man, that sounds terrible!  We don't by any means feel like this is something that WE did to Leyla but, in reality we both had to pass one non-working gene of the same type to her for Joubert's to be present.

The information given to us today was very helpful though left us with a lot of questions and things to think about.  We already knew that if at some point Eric and I decided to have another child, there is a 25% chance that he/she would also be affected by Joubert's Syndrome.  We were informed today that there are pre-conception as well as prenatal options available that can help to determine whether the new baby would have Joubert's.  Interesting. 

First thought...we would not ever, ever, ever terminate a pregnancy so, the prenatal options are out.  No need to even go any further than that.  So, then conversation turns to the pre-conception options. Basically, the DNA in my eggs and Eric's sperm would be analyzed and those that didn't have the non-working gene's would be implanted, much like an invitro fertilization process.  Hmm...that spurs many questions for me...
  • Is that sticking our hands into something that God did not intend us to be able to control or manipulate?
  • At some point in her life, Leyla would likely find out that we had that procedure done, would that make her feel like we took these extra steps to make sure that we didn't have another baby like her?  Can you imagine?!
  • We love Leyla more than anything in the world, why would we even consider this?  Just to make life easier on ourselves?  Is that just being selfish? 
  • What's better, for Leyla to have a brother or sister that has Joubert's and can totally relate to her or for her to have a brother or sister that doesn't have Joubert's and can love and support her and be her best friend regardless of her condition? 
  • Doesn't the Lord only give us what He knows that we can handle?  Is He using Leyla's condition to teach us something about ourselves or about Leyla or using Leyla's condition for us to educate others about Joubert's?  If He will only give us what He knows that we we can handle; who are we to manipulate that before conception?
Let's rewind for a second...at this point in time there are no plans for us to have another child at all.  In fact, from the minute that we found out that we were pregnant with twins we agreed that we were done after this pregnancy!  I think both Eric and I are a little on the fence about it at this point for many reasons but, let me just reiterate, right now there are no plans at all for us to have another child!! 

I'd love to hear your opinions on this!  Feel  free to comment!  Have a wonderful Tuesday!

Jenni 

7.26.2010

What is Joubert's Syndrome?

As I sit here google-ing, trying to figure out what to expect for our appointment with the geneticist tomorrow, over and over I run into the definition (if you can call it that) of Joubert's Syndrome.  Even though, I've read this 9 million times in the past two months, I still don't feel like I fully understand what it is, what to expect, where it comes from or what causes it, what it means for Leyla's future, I could go on and on.  All of that said, it made me realize that if I don't fully understand and I've been to all of the doctor appointments and read all of the reports; surely, you all can't completely understand.  So, I've taken the "definition" from the Joubert Foundation's website and I've posted it below. 


Joubert syndrome refers to a disorder in which there is a specific abnormality in the part of the brain called the cerebellar vermis. There is a group of genetic conditions and syndromes that may share this cerebellar malformation, and they are known as Joubert syndrome and related disorders (JSRD). These conditions have some characteristics in common, but there is a spectrum of symptoms and abilities in affected individuals. For additional information regarding this family of conditions, please refer to the Joubert Syndrome Foundation & Related Cerebellar Disorders website at www.jsfrcd.org.

Individuals diagnosed with classic Joubert syndrome traditionally exhibit the following features:

-Underdevelopment (hypoplasia) or complete lack (aplasia/agenesis) of the cerebellar vermis, usually indicated by the “Molar Tooth” sign found on an axial view of a brain MRI scan.

•Developmental delays—variable severity.

•Difficulty coordinating voluntary muscle movements; uncoordinated movements (ataxia).

•Decreased muscle tone (hypotonia).

•Oculomotor apraxia (OMA), which is a specific eye movement abnormality in which it is difficult for children to track objects smoothly. Eyes may appear to jump, with jerky eye movements.

•Difficulty processing and reacting to information received through their five senses.

Explanation of features:

Individuals diagnosed with Joubert syndrome have an absence or underdevelopment of part of the brain called the cerebellar vermis which controls balance and coordination. The severity of the resulting ataxia (uncoordinated movements) varies from person to person.

Decreased muscle tone is common in children with Joubert syndrome. As a result of the poor muscle tone, developmental delay (usually in gross motor, fine motor and speech areas) is common. Some children have also been noted to have abnormal eye and tongue movements. Developmental delays are usually treated through physical therapy, occupational therapy, speech therapy, and infant stimulation. Most children diagnosed with Joubert syndrome are able to achieve standard milestones, although often at a much later age.

Some individuals experience difficulties resulting from an inability to appropriately process information received through the five senses - hearing, seeing, tasting, touching, and smelling - as well as from their poor sense of balance and muscle movement. Some families have found that sensory integration therapy can help to minimize these sensory issues.

Overall health and growth are not known to be severely affected by this condition unless significant liver or kidney failure occurs.

Management and treatment:

Presently, there is no cure for Joubert syndrome. It is recommended that individuals with Joubert syndrome see the appropriate specialists necessary to help monitor their various clinical features. Suggested specialists include a nephrologist (kidney doctor), ophthalmologist (eye doctor), geneticist, and neurologist, as well as any others recommended by your doctor.

Screening for some of the complications associated with Joubert syndrome-related disorders, such as liver, eye, or kidney involvement that may become progressive over time, is recommended on an annual basis.
 
Okay, I hope that helps a little bit...or maybe it just made it even harder to understand!  Basically, the bridge that connects the two halves of the brain is either underdeveloped or non-existant (underdeveloped in Leyla's case) so the two halves are not able to communicate with each other causing Leyla's low toned muscles, balance and coordination problems, and it's why she doesn't crawl, roll over, and hasn't begun to walk.
 
Whew, that's all for today!  Enjoy the beautiful night!
 
Jenni

7.23.2010

Leyla's First Birthday Party

Finally, a week later, here are some pics from Leyla's first birthday party! 



{Happy Birthday Leyla!}


{Not crazy about the cake...}



{Leyla sure loved it when everyone sang Happy Birthday to You!}



{So many awesome gifts to open!}

Happy Birthday to our little peanut butter!  We love you!

{Tuckered Out!!}

Thank you to all of you who came to celebrate Leyla's first year with us!  Your gifts were so generous and we were so honored that you chose to spend your Saturday afternoon with us!!  Leyla is blessed to have so many amazing people that love her!!

Have a great weekend!
Jenni

7.21.2010

Buh Bye!

Quick post before I jet out of here to grab Leyla from daycare!


Leyla waved "Buh Bye!" for the first time last night!  Whoop whoop!  Cutest thing EVER!


She also had her 12 month well check appointment today with our awesome pediatrician, Dr. Rosenthal!  Here are the stats:
Weight - 17lbs 14oz (6th percentile)
Height - 28.25" (24th percentile)
Head - 45...mm? cm?  I don't know...either way 48th percentile




Have a great night!

Jenni

A couple new photos from Leyla's first few days as a 1 year old!!


7.20.2010

Neurologist Appointment

Yesterday we had the first visit with Leyla's neurologist, Dr. MacDonald, since she had the MRI and was diagnosed.  He did a great job of showing us what it was in the brain scan that they found that diagnosed Leyla with Joubert's Syndrome.  He seemed very optimistic about her progress just in the month that it has been since he last saw her.  He noticed that her fine motor skills seem to be developing really well, he was very pleased with how she is sitting and making sounds.  One thing that Dr. MacDonald told us when we initially saw him is that if a child sits by the age of two, they will eventually walk.  This is great news to us because Leyla is getting pretty good at sitting on her own so, that really gives us hope that at some point...only God knows when...she will walk!  So, all that said, we left the clinic yesterday feeling very encouraged about Leyla's development and progress!  Our next step is to get her into a physical therapy program!

Random Side Note:  I was veto'd on posting the 365 days of photos of Leyla so, I'm still going to take the photos...I just won't post everyday!  Although, someday this week, I will get the photos from Leyla's 1st birthday party up!  What an amazing day for her!  We had so many loved ones there to celebrate her with us!  She is one very loved little girl that is for sure!

Have a great day!

Jenni

P.S.  Happy Birthday Uncle Mason!  Love, Leyla Quinn

7.17.2010

Leyla's First Birthday Letter

A year ago today….oh man, A YEAR AGO TODAY! A year ago today my day started out just like normal, me whining to your daddy about having to go to work again, we both got dressed and said, and “I just want to be super comfy today!” Then we walked outside and it was FREEZING out in July! Cloudy, gloomy and cold! We had our regular doctor appointment that day so, daddy came to pick me up from work at 1:30 in the afternoon, he brought me a Dilly Bar and we headed down to Burnsville to watch you on the TV for a bit. The ultrasound technician took a long time looking you over and you didn’t want to move much for her. The fluid that kept you warm and safe (kind of like your own personal bubble wrap) was low. After almost an hour of watching you on the great big screen, the doctor came in and said, “Alright, you’re going to have a baby today!” She sent us over to the hospital where we met with my doctor and after a super quick c-section delivery, A Year Ago TODAY, you were born!


The love that you have brought into our lives is amazing! It’s a whole new kind of love that I’ve never felt! It’s different than the way that I love your daddy, different than the way that I love family and friends and Zoey, different than the way that I love Chinese food or ice cream. Different than the way that I love life, and the Lord! It’s not a better or worse, more or less love…this love has enriched my life!

With this new crazy love came a whole new range of emotions! I’ve felt helpless when you were having your chest x-rayed when you were sick, I’ve felt despair when in your first few weeks there was nothing that I could do to get you to stop crying when daddy wasn’t home. There were feelings of pity when you’re in pain from IV’s and shots being stuck in you. On the other side, I had so many feelings of unexplainable excitement when you rolled over for the first time, when you started clapping, when you talk for so long like you have so many stories to tell. Feelings of pride when you began sitting on your own and unbelievable feelings of honor just at the mere fact that I get to wake up every morning and see your smiling face!

Leyla, your first year is behind you. Gone are the days of lounging in your bouncy and drinking out of a bottle. Gone are the days of the helmet and the pacifier. Now are the days of the sippy cup and big kid utensils. Now are the days of the beginnings of crawling, walking and talking! Please know that forever I will be here for you on your path through this crazy thing that we call life. A hand to hold as you take your first steps, two hands to be there to catch you if you fall, and a life time of putting my whole being into doing everything possible to help you become the amazing person that you want to be and that I know you will be!

How blessed your daddy and I are to be on this journey with you! We thank God endlessly every day for entrusting us with your precious life! Thank you for an incredible first year! We look forward to so many more!

I love you more than words can say!

Mom

7.15.2010

A Year In The Life...

As Leyla's 1st birthday approaches, I keep reminding her how old she is (Monday she was 360 days old...today 363 days old, etc.) and each time I say that to her I wish I could vividly remember each and every day of her first year!

In the last couple weeks as I've come to the realization that my baby is going to be 1 year old (duh! I know), I think about all of the..."I wish I would haves" and the "Why didn't I's."  The two on the top of my list are; make a blog (check), and take a picture of Leyla every single day even if it's just a quick one on my phone!  So, that's my next mission!  For Leyla's second year, I plan to take a picture of Leyla every single day of her second year, no matter what is going on in our lives or how busy we are.  With today's technology we can snap pictures so easily anywhere there really is no excuse not to!  I wonder if when Leyla is an adult she'll say, "Thanks mom, that's really cool that you took pictures of me every day of my SECOND year but, what about my first year?"  Let's hope not! 

Beginning July 17, 2010, I'll be posting (in addition to my normal posts) one photo of Leyla each day (A year in the life of Leyla Quinn) whether she's having a good hair day or not!  Since I didn't do this for the past year here is a year in the life of Leyla Quinn...month by month style!  EDITED: Sorry the backgrounds weren't lining up correctly and it's driving me crazy!  So, no more year in the life photos!

Have a great day! 
Jenni

7.14.2010

Nah Na Nah Na...Hey Hey Hey....Goodbye!!


Sayonara Mister Helmet!  I'm sorry to say that we're not the least bit sad to see you go but, we are very thankful that you assisted in the reshaping of Leyla's head! 

This morning Eric took Leyla to her final helmet appointment!  Yay!!

Don't get me wrong; the helmet made a huge difference! Leyla's head went from a difference in diagonal measurements of 12 mm to 3mm in just 5 months!  But my goodness was that thing a pain in the butt!  In reality, it was probably much harder on us than it ever was on Leyla but, I'm sure she's excited to not have to wear it as well!

Enjoy your day!
Jenni

7.12.2010

Yay Leyla!!!

"Yay Leyla!  Good job!"  If you were anywhere within the 3 mile radius of Eden Prairie this weekend you likely heard us yelling this over and over again!  Leyla made some great progress this weekend!  She now starts clapping when you say, "Yay!!" and, finally, 6 months after most babies do; Leyla found her feet!!!  She started grabbing at them, trying to put them in her mouth, etc.  She did get a little frustrated that she wasn't able to put her knee in her mouth but, then realized that the ten little piggies were much easier to get up to her mouth!

Quick update:  Leyla is scheduled to have her Electroretinogram and eye muscle surgery on 9/8/10.
Here are a few of my favs from Leyla's 1 year photos done by Jill Dahmen of J. Kristine Photography

Jenni

7.07.2010

First post...

Hello. This is my first post for this blog and I'm feeling a little weird about it...initially, my thought is who is going to care about my boring life enough to follow my blog?!  But then I came back to the real reason that I'm writing this...the sunshine of my life, our little "Keypad"....Leyla Quinn!  As I've been poking around on the internet reading others blogs about their pregnancies, their newborns, their day to day lives, I really started to regret not doing the same.  What a cool thing for a child to look back on!  So, while I spent hours upon hours creating a photobook of Leyla's first year on Shutterfly; all of these other brilliant moms were blogging about their babies!  Sorry Leyla, that I didn't think of that from the beginning!  Not to mention, what an awesome way to keep family and friends that are far away in touch with the happenings of our little one!  All of that said, whether you're here to follow Leyla's progress or to let my boring but crazy life give you a few laughs or even maybe make you shed a tear, I hope you enjoy every minute of it and feel free to comment as necessary.

Here we are almost a year after Leyla was born and I'm joining the blogging mommy world!  It has been a crazy, emotional, exciting, fun, exhausting, roller coaster ride since December 8, 2008 when my awesome husband Eric and I found out that we were pregnant with our first little bambino(a)!  I'll give you a quick recap on the ups and downs of the past year and a half since we found out that Leyla was coming into our lives!    On January 18, 2009 (7 days before our wedding), and the day the cable guy was coming...I headed out for our first ultrasound appointment to determine how far along I was!  I told Eric that he could stay home and wait for the cable guy because we likely wouldn't be able to see anything at this point anyway...boy was I wrong!  As I laid on the bed the ultrasound tech asked me approximately 3 times if I had already had an ultrasound and if I was sure that I was pregnant...ummm...Yeah!  Then she proceeded to tell me that we were having twins.  Yes TWINS!!  There were two heads, 4 little arms, 4 little legs...Holy Crap! We were having twins!  Needless to say, Eric was a little bummed that he stayed home for the cable guy!

I'm really trying to keep this short so, I'll fast forward a few weeks...to our next appointment.  Eric did come to this one.  We were so excited to see our two little miracles!  My OB, just brought in the portable ultrasound machine to take a quick look at everything and I knew after her searching around for a few minutes and by the look on her face that something was wrong....she wasn't able to find a heartbeat for Baby B.  Being that she was using a portable ultrasound machine she wanted to be 100% sure so, we headed up to the University of Minnesota Maternal Fetal Medicine clinic to have a level 3 ultrasound done.  It was confirmed that Baby B had passed and the ultrasound techs and doctors began looking at Baby A with a fine tooth comb.  It seems Baby A was taking more of the oxygen and blood that were being provided which deprived Baby B of what she needed...yes, SHE, they were two girls!  The doctors found that Baby A was under quite a bit of stress from Baby B passing and there were some questions about he brain and heart development.  We later named Baby A, Leyla Quinn and Baby B, Ava Grace.

As the pregnancy progressed, it stayed as a high risk pregnancy and we had ultrasounds every 3 weeks to make sure that Leyla was developing as she was supposed to, and she was.  In the last couple of months we began having weekly bio-physical profiles that soon turned into 2 times a week because of low amniotic fluid.  On July 17, 2009 we went in for our 2nd bio-physical profile for the week and the tech wasn't really saying much while measuring the pockets of fluid, she left and came back with the doctor that basically said, "Alright, you're going to have a baby today."  We headed over to the Labor & Delivery unit...it was definitely a weird feeling just walking on into the hospital knowing that in a few hours I was going to be a mommy!  Crazy!  We checked into labor and delivery at 2:50pm, chatted with our OB a bit and decided that a c-section was the best way to go to have the least amount of stress on Leyla possible.  And at 4:12pm, the most amazing, beautiful, tiny little creature made her appearance in this crazy world! 

Whew...this is getting lengthy...we'll speed up the process a bit...Leyla's first few months were awesome!  She was such a little peanut!  Talking all the time...blowing bubbles...cutest thing EVER and I'm not biased at all!  Fast forward through the winter to Leyla's 9 month doctor appointment; she's looking good but, not sitting, rolling over, crawling...she's missing her developmental milestones.  Our pediatrician then sent us to a neurologist and on June 9, Leyla had an MRI done of her head.  She was diagnosed with Joubert's Syndrome; a super rare genetic malformation of the cerebral vermis which controls balance, coordination, muscle development, etc.  So, that's pretty much where we are with Leyla right now.  Waiting to see specialists, waiting to to have tests done, waiting for answers, waiting, waiting, waiting, to find out what the severity of her condition is and what we can do to help her progress and develop as much like a "normal" kid as possible!

Okay now that we're all up to date...I don't want to focus on Leyla's medical issues in this blog...it's intended to be more of a light read about life, love and Leyla!  What goes on from day to day...random ramblings, photos, I will put information that I get from doctors, readings, etc. regarding her health stuff and Joubert's in here when it fits or if it's something on my mind....that said, enjoy!