23 month update

23 months already? Where does the time go? In 4 short weeks Finley will turn 2 years old. Things continue to go great with her health. She remains reflux-free and is not taking any medications except for vitamins. We are still nursing and she isn’t showing any signs of dropping any feeds.. I keep hoping it will be a natural, baby-led weaning – but I guess we’ll just take it one month at a time. I am just so thankful that I am/was able to breastfeed her, and just love that closeness with her.  I also think it has to be one of the contributing factors to why she has been so healthy.. I think in these 2 years she has only had 2 very mild colds so far.

Developmentally she also continues to be right on track and even ahead in some areas. She is really starting to put sentences together and it just cracks me up. I still look at her like my ‘baby’ and when your baby gives you an order, “you read now please.” It’s just funny. She will also go up to Rowan and hug her and say, “I love you, Rowey” or now she is even starting to say Rowan. It just melts my heart to see them give each other loves and say I love you to one another.  I think as a parent, there is something so special to witness those loving interactions between siblings (between fighting over toys, and clothes, and who is in who’s room – seriously, already???) It is just so amazing to see their love for one another already. Rowan is very protective of Finley and really does look out for her. Finley is obsessed with Rowan and always wants to be around her and follows her like a puppy. The first thing she asks for in the morning is “Ro-ro.” Of course, sometimes Rowan likes it – and sometimes she pushes her out of her room and says, ‘stay out Finley, I don’t want you to break any of my stuff.’ The turf wars begin at an early age, don’t they?

She is small- we haven’t been the the Ped for a while, so I am hopeful she is staying in her curve of 10%. As she gets taller, she is really looking thin to me, but I think that is just going to be her frame/body. I try to stuff as many calories in her as I can…but as many of you know – many toddlers are much too ‘busy’ to be bothered to eat large meals.

Also August 12th will be a very special day because it will be the 1st inaugural Ladybug Run for CDH Awareness- and our first major fundraising effort for the Ladybug CDH Foundation.  We have already been contacted by the Pediatric Surgery office with a potential need that we could assist with beyond the research project – so we are really hoping to raise some funds! We already have a great headcount and are hoping by race day we will hit our 200 adult target.. we are already over halfway there and most people don’t sign up until the final weeks before a race.  Next year we will be able to add the fundraising element to the Ladybug Race, so people will be able to raise money (like the March of Dimes model) for our charity…  but for this year there is also another amazing, new run that people will be able to direct funds to the Ladybug Foundation through called Cause and Event.  My friend Amy is putting this event together and she is one amazing woman and will be in my list below to pray for, as she just had a double mastectomy yesterday – but is 100% cancer free today! Please do help us advertise (both events) by posting on Facebook, sending emails, Twitter, whatever it is you are comfortable with.  We are really hoping to see lots of other CDH families there as well. We will be doing a Ladybug release to honor the Angels, and will have bibs that people can write who they are walking/running in honor and/or celebration of… It’s going to be a powerful day.  Here is the link again. http://www.reasontorun.com/races/ladybug.html If you are local, please join us and either walk/run or volunteer! After planning and thinking about this event for so long, I can’t believe that the day is coming up so soon.  To see all the pieces come together has been nothing short of being led by God. There is no way I could have put this race together if it wasn’t his will.. and that just gives me goosebumps.  I am very excited to see where this all takes us and how we are able to reach out and help others.

We will also be participating in a Tree U-Cut fundraiser around the holidays with Parson Landing Christmas Tree Farm, where they will be giving us the proceeds of half of each tree cut if people bring in a flyer.  (We will be posting this here, on Facebook, and have some flyers with us on Race Day).  Each year this farm partners with a charity and this year we have been chosen. We are very honored by this.

Well, it has been 2 hours and I don’t think Finley is going to nap today. She has enjoyed taking off her sleep sack, playing with her toys and throwing things out of her crib. I guess it’s time to go play….

Prayer Requests:

* There has been another change with the surgeons at the office Finley is seen at – trying to decide if we will follow Dr K up to OHSU, or see one of the 2 other doctors Emanuel. Praying for guidance as to who will be the best doctor to watch over her care. Since Finley will need another MRCP to check on the bile duct (still praying it is NOT a choledochal cyst!!) in October, I will be requesting they just do her diaphragm X-Ray at the same time since it will only be about a month later from when she is due to be seen for her CDH. So we will need to decide by October.
*Angel Samuel’s Daddy needs all the prayers he can get right now.. http://nineteen-days.com/2012/07/13/please-pray-if-you-can/
* Pray for Amy as she recovers and that she will not need chemo/radiation.
*CDH babies Bonnie, Oliver, Parker, Jordan, and Laila all fighting so hard. Strength for their parents.  Big praise that Killian just went home… Mr. 2%!! He is more proof that there is ALWAYS hope.

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an update in photos

I am horrible about uploading my camera sometimes… I found photos from December on this upload.

Finley is doing great… She is getting more verbal every day. She says; Hello, Bye, night-night, no-no (so cute right now, but I know it becomes less cute as they get older), YES!!! (usually with great enthusiasm), Ro-Ro, Octopus (what she says sounds very close, but also very funny), I do, apple (for some reason one of her favorites), num-nums (when she wants milk) and a few other things.

She also is obsessed with dancing and spinning. I will need to get it on video and upload. Let’s see how long that takes me.

And a shameless plug for the Ladybug Run…http://www.reasontorun.com/races/ladybugreg.html Have you registered?

A proclamation and a termination….

CDH Awareness Day - now official in Oregon

It is actually quite easy to get a Proclamation in Oregon… You go to the website, you fill out the template, you email it in and/snail mail.. and in our case within a week or so – it was official.  Complete with a fancy  letter with a shiny seal.  Now, I think you must have a valid reason and they wouldn’t approve “Jon XXX Awareness Day” but it was a painless process and I am excited about the awareness we will be able to raise from this little piece of paper.  We need all the awareness and attention brought to this life threatening birth defect so that hopefully it will finally get the research funding it deserves.  I want to see them be able to grow diaphragm for these kiddos in the next 5-10 years so they can stop using Gortex for the repairs.  I would love to find out what causes this defect and if it could be prevented.  There are so many areas of research needed.  If you want to help more go here.

A termination. Well, sort of. Finley met with Early Intervention today to review her annual goals and see where she is at. She met or exceeded all goals and just blew the team away with all the things she is doing/saying, etc. We agreed to make her case ‘inactive’ because there are no areas of concern and really, that has been the case for 6+ months now. She is eligible for services through EI until she is 3, so we want to leave the door cracked in case she does experience some sort of delays down the road (unlikely).  My coordinator has never done this before and I just teared up knowing full well how blessed and fortunate we are.

“There is not the slightest doubt in my mind that the God who started this great work in you will keep at it and bring it to a flourishing finish.” Philippians 1:6 MSG

Drama Queen

You may remember that in Finley’s early days she really showed her character traits of feistyness and earned herself the nickname “drama queen” with her nurses. At the age of 17 months  those traits are only becoming more evident and I just continue to praise God for her stubbornness, strong will, and fierce determination. These are the things that God blessed her with that gave her that will to keep fighting in the NICU, and now gives her the will to fight the car seat, the high chair, diaper changes, clothing changes, big sister stealing toys from her (this is an area where it comes in handy)…shall I go on? I laugh because she is just so funny. Since she started walking she does not want to be contained. Ever. She is a busy girl and you cannot stop a rolling stone. I think I had a bit of this with Rowan too – this is a stage I must block out. When you have to practically pin your child to the floor  to get a diaper changed. But whenever I hear that scream of defiance, I smile and thank God for it. Now, when I am in the parking lot fighting to get her in the car seat – there might be a minute of frustration in there too – but I am forever thankful. I think I may have two strong-willed girls on my hands – but I wouldn’t have it any other way.

As, I am trying to write this update about Finley, but my heart is heavy and I keep thinking about another CDH baby fighting for his life today. Killian. I keep praying that God will intervene and help him pull through this. Please join me in praying for this family.  Reading his mama’s post brought me to tears.  www.killiankayne.blogspot.com. Hug your babies close today. Be thankful for good health. Give yourself grace if you didn’t get everything done.. if you loved on your children today that is all you really needed to do.

Leaving you with some recent photos of Miss Finley…..

Another Anniversary

Today is the first anniversary of the first time I got to hold Finley. For those of you who followed our story closely, you may also recall that this means today is also the one year anniversary of Finley’s repair surgery. After 19 days Finley was finally strong and stable enough for them to operate. Praise God!! I remember everything about this day.

Look at how far we have come.

Finley climbed up the entire flight of stairs today. She has started trying to stand “hands-free” and is getting more confident each day with attempting to cruise around. Before we know it she will be walking!

So amazingly enough – I am not stressed about the cyst situation. I am taking it one step at a time and right now I am just waiting for them to call and schedule the MRCP. We’ll see what that tells us. Everywhere I turn God is reminding me to trust in him and not worry. The sermon on Sunday at church (which was amazing- anyone struggling with fear/worry – you should listen to this message http://www.ajesuschurch.org/topic?id=855&c=1190#855); the Beth Moore book I picked up and felt led to buy “Believing God”; and the whispers from my heart.  It’s going to be ok.

“God does not offer us a way out of the testings of life.He offers us a way through, and that makes all the difference.” –W. T. Purkiser

Grow Baby, grow….

So I didn’t mention last time that when I weighed Finley at her Doctors appointment – she was actually down an ounce from her weigh in 3 weeks prior. No one (besides me) was worried.. but that doesn’t mean I haven’t been praying and trying to stuff her belly full. Her next weight check is this Wednesday as we have our home nurse stopping by. Please join us in prayers for a good gain this time… I am hoping for a pound (as always, being bold!).

Have just started planning Finley’s birthday party and I am just so excited to see this day come. Can’t wait to post photos from the landmark day.

AAAANNND… She’s crawling!! It’s just a few steps on her knees, then she drops to her belly for some commando crawling, then rolling, and/or moving back into a sitting position… She has a very unique way of moving around a room to get what she wants. But Finley never did do things the way she was “supposed” to…. why would she start now?

18

Finley had a great appointment with Speech Therapy at Emanuel on Friday and the Therapist said that Finley is right on track developmentally with all her feeding activity. She didn’t think the occasional gagging was a problem – maybe too big of bites, or showing us that she is done – and encouraged us to start with some finger foods (meltables) and thicker consistencies. She said Finley was a rockstar and she was super impressed!  While I was at the hospital, I stopped by Lactation to get her weighed and much to my surprise she had a huge gain this week and had hit 18 pounds. Such a huge praise.

Her core strength is getting stronger and stronger each day- it is so amazing to see her be able to sit longer and longer periods of time. Now I am scared she may be crawling before we know it.  In the next 5 months she will most likely start crawling and walking… this just boggles my mind. It feels like this first year is just flying by.

Please say prayers for Hollis this week – he is getting very close to being able to go home after a VERY long journey. He just needs to prove himself on full feeds by mouth for a few more days. Mama Kelly really needs to take her baby home and be with her WHOLE family again. We praise God for all he has done for Hollis so far and just pray that he can come home this week. AMEN!