Walking, Walking Everywhere!

Showing us what a big girl she is!

Lucy's been walking for awhile, but we really couldn't call her a toddler until this week.  She has definitely passed the threshold of preferring to walk versus crawl (even though she is still a way faster crawler!!).  She is doing awesome at walking and loves the freedom it gives her to have her hands free to get into more stuff!

Ready for the Hydro walk!

As I mentioned previously, we participated in the MN Chapter of the Hydrocephalus Walk earlier this month.  THANK YOU again to everyone who helped us meet our fundraising goal.  Your support is overwhelming to us and we so appreciate having you in our lives.  It was nice to meet some other families in the area who have children with hydrocephalus or are dealing with it as adults.  We were reminded of how blessed we are to have Lucy and thankful that her hydrocephalus has been under control so far.

"Helping" us unload the dishwasher - she likes to get up close and personal with it

Lucy's been busy exploring all nook and crannies of the house - she still loves the bathroom (sort of embarrassing, really, since she follows people into the bathroom and if they shut the door on her, she'll bang on it until they open it.  She does not limit this behavior to Jason and I - really anyone that visits is free game, hahaha!).  She got to spend all day with grandma this week when my mom came to watch her on Tuesday so that Jason and I could have a date night and celebrate his birthday.  We found the birthday card that the nurses in the NICU made for him last year - it was signed with her footprint, which I cannot believe was ever that small!!  Her favorite word is currently "Arf," as in what a puppy says.  It is often the first word she greets us with after naps and she has been very into her books with animals in them.

Hanging out with the neighbor's cats...she also thinks they say "Arf"

We had a follow-up ENT visit on Friday.  Since her tracheomalacia (a.k.a. noisy breathing) is getting better, they don't have too much of a concern for her and we only have to visit as needed (Woo Hoo!).  Our doctor did say that if she has any aspiration at her next swallow study, there is a procedure he can do  to inject a temporary molding in her her throat to help close it off more tightly when she swallows.  It not something we had ever even heard of before last week, but good to know that it is an option if we needed.  However, if you have been a blog follower for awhile, you know our thoughts on swallow studies - so far they have not been very "natural" so we take the results with a grain of salt!

Lucy continues to delight us with her fun personality, silly giggle and melts my heart with a simple whispered "mama" right before she nods off to sleep.  Love this little girl!

Successful Esophagus dilatation

Naptime hair - messy!

Lucy's endoscopy and dilation on Thursday were again successful.  She had something stuck at the surgical site scar tissue area and her esophagus as a whole had closed up quite a bit again, very likely due to the irritation caused by whatever was in her throat.  I have no idea what it was (the doctor wasn't sure either, he thought it looked like a small piece of meat, perhaps?), but am not surprised, as we just got back from vacation and she will pick up ANYTHING and try to eat it!  Thankfully at home, she is less likely to eat things that she can't get down.

We are back to the 3 week schedule for these things (boo!) and talked a little with the doctors about if there are any other options for correcting the issue (like a one-time lasering of the scar tissue ridge, which we have read about).  They really feel like that would be too traumatic for her site, since it is such delicate tissue.  So, we have to decide if we want to pursue a second opinion on that or wait and continue with this course of action.

She is doing SO much better, especially at eating.  She is back to her happy, giggling, full of life self, which is a huge relief for Jason and I.  So, we are back to enjoying one last stretch of summer weather before fall comes!

Before I close, Lucy wants to type something to you all (I think she may have broken my zero key, haha!!):  
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8888888888888888888888888888888888888888880
444440,n./ kjbv nbvbf000000000000000000000000
10

0000000000000000000000000000000000000000000000000.......

Lucy's first frozen yogurt - loved it!

Unexpected Procedure tomorrow

Lucy's had a rough week, poor baby!

She's been having a lot of issues with food lately, almost back to pre-dilatation days in March.  She is unable to handle any cookies, crackers or baby puffs and gags a lot on purees as well.  We've been feeding her "soup" consistency food, but she will only eat a few bites before she is D-O-N-E.

We are not sure what is up (I have several theories - I always have a theory!), but it is likely that something is stuck in her esophagus and not allowing things to pass, her stricture has gotten very small again and her esophagus is almost closed, or she has some type of allergies and has massive amounts of mucus that she is unable to handle swallowing/draining on her own.  It is likely a combination of things.

We were originally scheduled for a dilatation next Tuesday, but after several discussions with our doctors, we have moved it up to tomorrow morning to see what is going on.  She is such a trooper and when she's not coughing or gagging is still in a great mood.  We are understandably a bit shaken up and do not know what is causing this issue.  I told my mom earlier tonight that I definitely have a love/hate relationship with her feeding tube.  Normally I hate it and can't wait for her to not require it anymore.  However, on weeks like this, I am grateful that we don't have the added complication of a dehydrated baby to deal with.

Huge thanks to co-workers, friends, family and Nanny Sue for rearranging their schedules to help free us up at the last minute and for the continued encouragement to us all.

So, prayers for miss Lucy and the doctors tomorrow as we figure out what is up, and make a plan for her immediate relief and a longer term plan for how to resolve this for her over the next few months and years.

Vacation!

As is tradition for many, many families in Minnesota, we spent the last week with my family at the lake.  We try to spent one week every other summer with my parents, both of my sisters and their families, going up north and kicking back a little bit.  This was Lucy's first family vacation at the lake and I'm pretty sure she loved it!

Can't we go outside, mama?  (She's got a bit of a sassy look on her face, doesn't she?)

Enjoying the great outdoors - much safer from the stroller, otherwise she'll eat everything she picks up!!

We started out the week by running in the Grand Rapids Tall Timber Days 5k (Lucy watched all the runners with my sister, Melisa).  She took her first boat ride (loved it, hated the life jacket!) and got to spent lots of time chillin' in her stroller in the shade.  She loves having all of her favorite people around and got very excited when she woke up and all of the family kept trickling into the room we we in - so many fun family members to entertain her!

Aahhh...I love summer!

The dreaded life jacket!

Lucy loves to point - we just have to figure out what she is pointing at!

Ready to take off...as long as we are close with a helping hand!

 

Walk for Hydrocephalus

Did you know that 1,000,000 Americans live with hydrocephalus? There is no cure. Having hydrocephalus can mean a lifetime of brain surgeries just to survive.  We are very thankful that Lucy's hydrocephalus has been completely controlled by her shunt and we have had no complications so far.  However, we know that is not the case for many who live with hydrocephalus.

Having Lucy in our lives means doing things that we never thought about doing and supporting causes we had never even heard about last year!  So, we are participating in the Minnesota chapter of the Hydrocephalus Association Walk for a Cure on August 10.

Thank You to everyone who attended Lucy's birthday party and helped us raise $430 towards our fundraising goal.  If you would like to contribute to our campaign, check out our fundraising page at: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1067666&supId=386062722.