Its been to long I know, I know… I was sitting here thinking “where should I start” then looking back its been a month since I lasted updated you on Lila and us…I’m so sorry. I guess life has a way of running away from you at times. But I need to promise myself to keep up with this digital “baby book” because Lila is hitting milestones and I haven’t been too good about documenting them…so yes SHE FINALLY GOT HER FIRST TOOTH! 

(I do tend to give mini updates via facebook  ”Lila’s Chance” now and again just because it is quicker…so please go there and “Like” it. We will be posting more once fundraising is set in stone too.) 

So what have we been up to since my last post ? ….LOADS! ITS SPRING TIME YAY!!!! Every sunshiny moment we are outside. But when it rains it pours right…we feel like this past month almost everyday there is something breaking or needing a tune up, we all have that don’t we? Our house was neglected for months and we are now feeling and seeing the affects of not being at home for so long. We have been scrubbing the deck, fixing the lawn mower, painting furniture, weeding and mowing, raking,  car needed a few new parts, getting out all our summer toys, and much much more. And it seems as if a family of wasps moved in while we were gone too and we think they have nests all under our siding, yeah big problem! I have been in search of a pest company that doesn’t cost an arm and a leg to come and rid of them without much luck. So we have been spraying on our own and trying to repel them. Willa freaks every time we see one so they need to find a new home cause we ARE BACK! There’s always something to do around here and we are trying to not let chores consume all of our time. We take the girls for walks, watch Willa play on her swings and trampoline, do all those normal things like bubbles, sand, chalk, scooter/bike riding, and just hanging out on the porch as much as we can before this nice weather fly’s bye. 

Willa had a great birthday weekend, that was my last post :(  Anything and everything on her birthday would of been spectacular to her just because we have not done much over the last year. My Mom, Dad, Sister, Sister in-law, nieces and grandmas came out for lunch, cake, and tea. Willa had loads of fun with her cousins playing in our garage that we turned into “Pixie Hallow”. She got everything she wanted from a Celtic drum, scooter, and of coarse new fairies! Lila was a little overwhelmed at first with the few “people”, once she napped she was a performer too! This was the first time Grandma Rosie met Lila :)  Little by little starting to share her with the world but with caution! 

Then on the 14-15th of April Doug, Lila and I headed for our over night stay in Cincy. Lila had a sleep study, swallow study, and lung scan. Sleep study was AWFUL! I have never seen her so pissed at nurses before. She wouldn’t even let out a cry she would bear down and growl. She was so mad and did not want to have her skin colored on then scrubbed with  sandy-soap, then glue and wires attached all over her head, arms, legs, and chest. She then had belts around her chest and a special cannula and with probes coming out of her nose. She looked like a crazy cat fish. It was so sad, I cried. All of her other procedures aren’t that bad and she is normally sedated this was just torture and I pray we don’t ever have to do it again. I didn’t even take any pics because it was so sad and I think we all had a panic attack. After a night of not much sleep, Doug and I shared a chair and Lila would just wiggle and a probe would come off or her cannula would get a booger in it and they would constantly have to come in and fix it, wake her up, and then we would have to pat her back to sleep. So after a long drive down, a night of no sleep we were off to battle yet another long day. They kicked us out before 7 am and then we waited for 2 other appointments. But before that we needed to see one of our favorite night nurses for breakfast and a little Lila cuddle! :) (no results as of yet from the sleep study. They sent over 1000 pages of info to pulmonary and cardiology for review and it will take at least 3 weeks before we hear anything.) Oh… why a sleep study? I think I may have explained this more before but its to rule things out. Is her brain not telling her to breathe when she needs too? Sleep apnea? and so forth. They turned off her oxygen once we got settled to see what happened. She did much better then what we thought. She hung around 87-89% SPO2 until she got a little fussy. Then we went to 1/8th of a liter and she held 90% for a long while, then dropped a little so she went to 1/4 of a liter for the rest of the night stating in the low 90’s which I guess is ok for a child like Li. We came home on a 1/2 and she is still there today :) Happy dance inserted here! Why she was needing a liter though the winter months we don’t know! 

Then we were off to a lung qunatation scan, which stayed about the same. 38% of her blood flow is going to the right small lung and 62% is going to the left bigger lung. Again this should be 50/50 but Lila will probably never reach that normal range because of her smaller lung size and problems we have with her left pulmonary artery (stint). No other news from cardiology so I think we sit and wait until August 1st and then see them again. We know there will be a heart cath in the fall :( 

Then next was a swallow study. We had a mix up with scheduling so in stead of leaving Cincy for home around 11 we had to stick around and wait for another opening at 2. Which was fine but made for a long day. Luckily the new family center is open and we got to sprawl out in there and watch tv. It is beautiful and I recommend all families who doctor there to check it out made our day much more comfortable and you didn’t “feel” like you were waiting in the hospital all day. Multi Million Dollar stay must of at least paid for a chair or something in there! :) 

Swallow study came back ok. I had to force feed Lila to take a thin baby food, thicker baby food and then just watered barium  Barium is a powdered die that you mix with a liquid so you can watch “where it goes” on a live X-ray machine  pretty freakin cool! So as I TRIED to get Li to eat Doug, speech therapist and techs watched what she did with it. AND SHE SWALLOWED! She actually had a great looking FAST swallow. Because I was forcing the liquids on her she did choke or have one little aspiration which she coughed back up on her own. Which is all good news but still doesn’t explain her cough, gag, wrench she is always having.  She can do it upwards of 12 times a day and as little as 4. Is it her swallow ? well it could be. So we are going back in June for a different type of swallow study with ears, nose, and throat Docs. Yes yet another department, I think by the time she is a teenager we will be registered with “all of the above”. The new test is called a FEES, they will place a probe, live colored camera, about as thin as a piece of spaghetti noodle up through her nose and then let it sit in her throat and we will watch what she does with her secretions and if she calms once in there we try food/liquid. I also think this is cool technology but then I think about what we are looking for, a question as to why she coughs, gags, wrenches, her swallow, and anatomy well a tube down the nose that sits in the back of your throat would make any normal person cough, gag, wrench…so I don’t know if this is going to do us any good or do her more harm. But I’m am usually on board with whatever the docs want because  I’m no doctor and they deal with this jazz on a daily basis. She will also have an upper GI done that day to look at her belly anatomy again, see if anything has changed. This is where they place the same kind of dye in through her g-tube, usually a  large volume, and then we watch it enter her stomach and work its way through. This will determine if she possibly re-herniated, reflux, has the nissen loosened, has she developed a hiatal hernia, or anything else that might cause an alarm or a reason for her to cough, gag, wrench. BUT Lila has coughed gagged wrenched like this her whole life. Once the sedation was gone she did the same thing on the vent and then she would poop but told it was just the vent tickling and secretions in her lungs, then once the vent was gone was told it was reflux, med withdrawals or formula, had the nissen and meds were gone, changed formulas a time or two and she still did it, told it was something she just needed to work though after the nissen, watched her gag on an upper GI in December and she did not reflux, so then what is causeing this? I hate that she doe it all the time, only time she gets upset now a days and most of the time she won’t get upset about it anymore. What’s my Mom gut saying….its something in her throat starting this motion of events, like abnormal anatomy, scar tissue or something of sorts. Did I mention even before her Nissin she NEVER threw up any volume, but we have always saw this same gag, cough, wrench and we still went though with the nissen, not saying she doesn’t have reflux, normally a common factor with these kiddos but now I wish we would of explored other things before jumping on that Nissen boat because it never changed her gag wrench….just made sure puke would never come up. I am sure we would of ended up with that surgery eventually,  not doubting the decision at all, trust everyone of them, just wishing we would of explored the gag, wrench more then instead of wondering what it is now with more and more tests. The only time she doesn’t do it at all is when sedated, like after a day of sedation from ECHOS, while sleeping and relaxed. She does it sitting up, lying down, playing, relaxing, tasting food, smiling one moment, gagging the next then smiling again after she worked through it. hmm… anyways praying for answers soon or peace of mind that it just a Lila thing she will hopefully outgrow like all the rest of her lingering problems. 

How is Lila? She is doing great! Other then this cough, gag, wrench she is developing well. Like I said she is at a 1/2 liter of oxygen back here at home and we are going to ween after we see her stat like this for a few more days. She is yet on another diet…chubbiers keeps putting on the pounds, 23lbs. 5 oz! Yeah that’s like a 2 year old…none of her clothes fit, and Willa was not in this season at that size so I am need of a serious shopping day. Even though I think she is absolutely perfect and I LOVE chubby babies she is looking a little state puff marshmello mannish  so we went down on volume and calories for a while. She will start a blended diet of real food and whole milk in a few short months. Willa was the same way until she entered toddler-hood, chubby chubby, and then became a tall string bean. I just have chubby babies and love it! She is moving more and more. Still no crawling or rolling over but getting better with her exercises everyday. Physical Therapist seems to think she is only developing about 2-3 months behind on somethings but spot on on others. We are so HAPPY about that, never thought she would be doing the things she is doing already considering her ruff start! She loves to sit up and play all by herself, so very content just looking around and with her toys in front of her. She loves TV and when Mickey Mouse Club house starts she starts kicking and smiling. She loves her exersaucer and she spins herself around and around with no problem, I have to keep unraveling her oxygen tubes that get going around her chest. She likes to be outside until the wind takes her breath away sometimes but that is a normal baby finding, no one likes that. OH and big news is she is CLAPPING! It is so cute just started this last week and she gets so excited! Of course she has been smiling and talking gibber for awhile now but when she started clapping its yet another milestone that melted my heart because she is LEARNING…RESPONDING to us, aaahhh… I will post a video for you! She hardly cries anymore, she is very happy content baby, very laid back and go with the flow, completely UNLIKE HER HIGH MAINTENANCE SISTER! I can’t believe I am admitting this but Willa is much more work then then her special needs sister, don’t  get me wrong a special needs baby is A LOT of work but a 5 year old with an attitude HA, untamable!…I blame it on their astrology signs, completely opposite personalities and love each of them so much for being so unique and different from one another! I can’t wait to see how differently they decide to tackle life when they get older. Willa is good. I go Monday to register her for Kindergarten (tears inserted here) I hope I can do it without crying! She is excited but I also see a little fear and sadness in her eyes when we talk about it, but I give her kudos for trying to be strong for Momma. We will see how this all goes this fall. She is enjoying the summer like weather but has some “conditioning” to do, we have all been so cooped up and lazy this winter that we need to build up our tolerance to movement and sunshine! Doug continues to be super Dad, works by day and then comes right in the door jumping in head first helping with the girls as I finish dinner, and helps me around the house at any and all moments.  We recently celebrated, well not celebrated, but recognized our 15 year “Dating Anniversary” on the 24th. We started dating at 16 and have literally grown up together and we love each other more then ever. Not too many couples these days can say that at the age of 31 they have spent half their life with their soul-mate.  We truly are best friends and I think that is why we have made it so far without a glitch. We have had loads of trials thrown in front of us but they don’t slow us down or put a wedge in-between us. We get through it all together!  I wouldn’t want another man by my side and I can’t believe it has been 15 years already, that went way to fast, but I am so happy we have many more years to come! These song lyrics say it all about US! 

“You swore and said                                                                                                                         We are not                                                                                                We are not shining stars 

This I know 
I never said we are 

Though I’ve never been through hell like that 
I’ve closed enough windows 
To know you can never look back 

If you’re lost and alone 
Or you’re sinking like a stone 
Carry on 
May your past be the sound 
Of your feet upon the ground 
Carry on……” 

We recently had a nurse here 3 days a week for the past month. I tried it but HATED it! So I fired the nurse. I could write a whole blog about this person but that’s not me to complain about an individual especially on here. But she was not a perfect fit for our family. We are conducting interviews next week for a new nurse,  we will try this ONE more time before we call it quits. I just don’t want this experience to cause us more stress or more work and that is what it was doing for us….so we will see! I don’t do well not being completely in-control of my kiddos, I hate passing the buck.  I do just fine taking care of them on my own, even if it is a tough lonely job and I could use the help, especially when Willa starts school. But I’m not just going to let some stranger come in my home and take over, while I’m right here. We are finally in our routine and we shared Lila with others caring for her for four months, when we finally feel like we have her and we are in control nursing becomes available. Just don’t know, I guess I am just one big mamma bear!  This is when I wish we lived closer to family! rrr…..anyways…..  

Lila and I visited Akron feeding clinic last week. I was hoping to start therapy with them and learn new things to help get her eating by mouth.  Well I got this ..”your doing great at home just continue all your techniques and we will see ya at the end of June” What? Yes that’s great we are doing good at home but I feel like we are stuck in a feeding rut right now. They think she still has a lot going on medically that feeding is not the main priority yet and once some of these medical things start going away she will want to eat. I agree and disagree but I also know we have made little progress at home but progress and it truly is up to Lila to want to do it. She is so stubborn hummmm wonder who she gets that from! We’ll get there some day… 

I know I am missing much more info since my last post but I can’t make this a one post novel. We are all doing good, the sunshine really helps! So nice to get out of the house! We even ventured out and took the girls to the outside outlets.  Technically yes it was a public place but it was outside and I was ok taking Lila and taking the chance. We were smart she stayed out of the stores and covered in her stroller. We fed the ducks, walked around, saw PEOPLE, Willa played at the playground, she got her yearly Crocs, and then back home…simple, sweet, splendid  and much NEEDED!

 Feeling so blessed to be home as a family of 4. I longed for my kids to be outside getting dirty, for spring/summer breezes blowing through my windows, for the feeling of home comfort, for my flowers and garden, baby birds nesting on our trees, for long walks, for our neighbors, for the grill, and so much more… its the simple things you learn to cherish when the big things and plans get swept away. But then I look back and it was just one BIG bump in the road and here we are on OUR path just a little different path! A path that actually has a purpose, a meaning, requires a whole lot of work, and a lot of undying love and devotion.

I hope these pics tell our last months story…

Much Love, 

Ash, Doug, Willa, and Lila! 

P.S. Fundraising planning is underway. Funday for Lila Jay; First Birthday Bash will be July 20th, 2013 at the Knox Fire Hall. A band is booked for that night for adults, family activities for the day and other plans are developing.  Sorry we can’t do the 5K this year unless someone is willing to take charge and roll with it, loved the idea but a lot of work to take on. My brother is considering doing a softball tournament that weekend as well, we will keep you posted. Soon we will asking for donations to auction off or donations to give to local families and hospitals. I’m working on a list of needed items. Thanks in advance for all your help and donations! I know we all can again come together and make a HUGE difference in peoples lives!

Little bity Birthday…

Dad and his girls…

Auntie Jo did a mini photo shoot…

Sunny Sunday in Cincy…

First time in a restaurant… happy, happy, happy! 

Getting ready for the sleep study….relaxing watching tv….

We had no idea what was about to happen…

Poor kiddo…

Morning after our ruff night…both all puffy eyed… :0O

Happy playing in the family center…

Swallow study…not impressed! 

Hot spring day…Willa all sugared up on Popsicles! 

Willa loves to make crazy pics on the ipad…

Oh I couldn’t handle two of them! 

Morning cuddles…

Ella cuddles….she loves protecting her baby sisters…

Ready for the SUN! 

First Stow Cone of the season…

Lila has her plastic cone with little tastes!

Our first family outing that did not involve a doctor or hospital! 

And yes you may of “caught” us…we snuck in our first family of 4 trip to Knox! My baby sister went to her senior prom and SHE WORE MY 13 year old PROM DRESS, couldn’t miss seeing her in it! I couldn’t believe she wanted to wear it and she wore it well. My Mom yet again put in the hours and made a new bottom and spruced up the top and she look great! I need to post a pic of Doug and I at prom… So we had a fun, sunny weekend! Lila did great on her first of many trips to PA! She got to met some great uncles, aunts, cousins and friends for the first time! A long over due trip we all needed! 

Yes this is us being goofy! Truly have the best sister EVER! 

Can’t believe how fast the years have gone bye! :(

Liv and Willa escorted their Auntie Jo to Prom! 

Who said you need a “date” when you can have this much FUN with the GIRLS! 

Grandma Rosie getting in some good Lila cuddles! 

Planting pumpkins with YaYa!

Bubbles! Thank You Aunt Barbie and Uncle “Ronnie Ray”…

Buggy Riding…

Shooting Great Grandpa Hartzell’s BB gun with Pap!