Many New Things! And Pictures!

So Skylar was quite the little flirt in the hospital during our last visit a month ago... there was a pulmonologist on call who would come visit us daily and Skylar's face would just light up when he came in the room - he was tall, brown hair, big smile... She would just smile back at him all the time - it was quite hilarious. Anyway, I say this because she hasn't done that ever before or since then, until now. Our good friend Thomas Clay came to visit us this past weekend - he's tall, brown hair, blue eyes, nice smile and all the girls love him... including Skylar! She could not stop smiling at him and this was HUGE because she had been fussy, consistent elevated heart rate, etc. for two days and really made you work for smiles. Kyle and I were lucky to get one a day from her and then all of a sudden, she's just all smiles for Thomas. He officially asked Skylar to be his girlfriend so all you other women out there - just know that Thomas is taken now, lol! Here's a picture of Skylar gazing at Thomas from across the couch :) I didn't get the smile captured, but know that it was adorable! We had a fun week and weekend with friends - old and new. It was great to see everyone!!!

So to catch you up on some things... We finally ordered the waterway baby neck ring so that Skylar could hopefully enjoy her bath time more. Ever since she grew out of her infant tub, our bath options have been extremely limited. Since she can't support her head at all, it's been challenging to figure out a way to keep her above water and still wash her and play with her. The inflatable neck ring was our last hope before I invented something myself... Luckily, it worked! Skylar's neck is a little small for it, so we added a washcloth in front to help with chin support that doesn't cut off her airway, but she seems to be getting used to it. I know it looks like a cast or something, but it's actually quite nice. We've used it twice now and the second time in the tub, she moved her leg by herself (something she hadn't done for at least two months because her thighs have gotten some fat on them and are much heavier now - I think she's about 11.5 lbs now...). We're hoping that as she gets used to it, she'll feel more comfortable moving and may even gain some control back in her legs. We'll see.

We've been watching movies during the day to keep Skylar entertained. Not that I don't love trying to keep her attention, but I think after all day with mommy, she gets a little bored :) So with new additions like Ratatouille and TinkerBell (thank you friends!!!), we're staying entertained! Kyle, however, has still not given into the animated movies... he has watched The Patriot with Skylar (thankfully she fell asleep at the beginning) and has viewed films like Vitus (a foreign film) and Avatar (at least it has bright colors despite the darker parts) with her as well. Don't get me wrong, all great movies, but Skylar's still a little young, lol. I will say he and Skylar watched Robin Hood, the cartoon, because it's his all time favorite, but we're still working on the others, hahaha. Here she is asleep on the couch afterward with a fuzzy head...


We're having a fundraiser June 19th to help raise money to go towards getting a van to transport Skylar and all of her equipment. It would actually be a fun Father's Day activity if you're still looking for something to do... Because of my love of photography, and the amazing talents and generosity of a great photographer named Tessa, (LightLoveLaughter.com) we're going to do a photo shoot fundraiser. There will be more information on the "Help Fight" page of Skylar's website and an event on facebook is coming, but basically you can pay a mini session fee to get 10-15 pictures of your family or friends and a 5x7 printed picture will be included with the fee. The pictures will be available to order online if you want more or to share with family and friends. All session fees and profit from ordering will go straight back to our family. Also, Tessa has graciously committed to donating a percentage of her profits for the month of June back to us as well so if you can't make it out June 19th and still want pictures, give her a call! She's coming to our house tomorrow to do pictures of our family - I'll put those up soon, but until then, you can have a picture of Skylar with her sweaty head mohawk :)


She's such an amazing little girl and does so well putting up with me!!! Even when I have to suction her, use the cough assist (which is pretty much like the scream extractor in Monsters, Inc.), and other torturous things, she doesn't even shed a tear anymore... She's my little champ. And then of course I do crazy things like give her mohawks :) What a trooper! At least she doesn't have to put up with scratchy lace and uncomfortable clothes... I do the best I can.

We have two check-ups this week - GI and Pulmonology. As I mentioned before, Skylar's heart rate has been a little elevated lately, but no fever or anything yet. Her mucous has been a little cloudy so we're wondering if she's fighting off an infection of some sort of if it's just the teething thing. If you could pray for her body to stay healthy, that would be much appreciated. So far, so good. We bumped up her bi-pap settings too so she's trying to adjust to the higher pressure of air at night which has been a little hard for her. I don't think she slept much at all last night (the first night on her most recent increase in a series of three) but she adjusted well to the previous ones so we're hoping tonight will be a better night. Oh shoot, I forgot to take a picture of the new additions in the nursery, but I'll just add that to my next post if I can remember!

One last thing to mention - I know it's a long post (at least there are pictures :) but a lot of people have asked lately... If you want to make a monetary donation to our family, you can do so through our church (and it can be tax-deductible) by sending it to Trinity Anglican Mission with an extra note that it is going to our family in addition to putting it in the memo line. Check the "help fight" page of Skylar's site for full details. That's all folks... Thanks for reading! I'll be updating again soon with our family pictures and more fundraiser details :) Have a great week!!!

Halfway There... 6 Months Old :)

Today is Skylar's 6 month "birthday" so we're halfway to beating the odds of seeing her first year birthday celebration! It was a glorious day, but more on that later. Here's my little angel :) Her brown mullet disappeared a few months ago and this strawberry blond hair is growing fast! We'll see if it changes color... still got those big blue eyes though!


This past weekend was great - Kyle woke up early to meet his mom, Gramma, Aunt Wendy, and cousin Kimberly at the Flying Biscuit (yum!) for breakfast and then they brought me back a bacon, egg & cheese biscuit - so nice to have a good breakfast! They had just arrived in Atlanta and would be visiting for a few days and we were happy to have them. While they were here on Friday, the Manross family came by with the special stroller, battery hook up for the car, an extra suction machine for us, and other misc. supplies. What a HUGE blessing! The stroller is amazing and Skylar loves it! She seems really comfortable in it... I took her outside in it for the first time today - below is a picture...


We have her pretty far reclined and her pulse ox machine fits nicely on the foot rest... the canopy is detachable and the suction machine hangs on the back handle. We're still working on getting it all set up with the portable power supply and other machines, but this is a great start and a huge help.

Anyway, we had fun with family and friends and had a great start to the weekend. The rest of the weekend was spent with family over meals and movies and it was really nice. Kyle and I have decided to split up church services so that we don't have to take Skylar out (even though I am sure she enjoys seeing people and other people enjoy seeing her, it's just a pain and kind of risky without the van and power supplies). Kyle went to the first service with his family and then came back while I went to the second service. We had lunch with everyone after I got home and enjoyed the company.

Kyle's family went to Ikea and bought us a really nice shelf unit for the nursery to help us organize her machines and medical supplies (picture coming soon). Our chiropractor came over today and even noticed that it looked much more put together, lol. A friend of mine from high school came over today as well and brought lunch so we could catch up with each other (we hadn't seen each other in over a year!) and she got to meet Skylar. Again, we're so humbled and thankful for people's generosity and thoughtfulness. We've gotten some stuff in the mail from people we haven't even met in addition to gifts from friends and it just means so much words can not express. We're continually blown away by the movement of God's hands and feet through this time.

Skylar's been pretty fussy lately - I am pretty sure the tooth pains are hitting her. Last week, I thought I might have broken a rib or she might have a bad lung infection because she would cry every time right before her oxygen dropped or when I would move her. We took her to get a chest x-ray (which I think I mentioned last post) and all was good minus a little inflammation. She's been sticking her tongue out more and sucking on her bottom lip, which I think is her compensating from not being able to suck her thumb or chew on something. Skylar was actually able to get her right first finger close to her mouth though and she's almost able to chew on it... She's a cutie, even when she's fussy. She'll give a few smiles out here and there still, but you have to work for them!

As I have been watching more and more Disney/Pixar films with Skylar, I am amazed how many of them have such great messages. Kung Fu Panda has a line spoken by the wise old turtle, "Yesterday is history, tomorrow is a mystery, but today is a gift... that is why it is called the present." I think it is a great reminder to live every day one day at a time because none of us are guaranteed tomorrow. We've watched Cars, Finding Nemo, Monsters Inc., and a few others too :) She really enjoys them and usually watches the entire thing if she's not tired. I need to get Ratatouille, Over the Hedge, and some other more recent movies so I don't have all of the ones we have memorized in the next month or so. She's kind of past the Baby Einstein stage, but we still watch some of them occasionally.

Kyle and I just watched Evan Almighty recently through our netflix and it was pretty hilarious. It was also a good reminder on trusting God, knowing God doesn't always answer our prayers the way we want Him to, and knowing that God's plan ultimately is the best even if you can't understand it at the time.

I kind of feel like I am stuck just waiting right now. There is a lot of progress being made with SMA research, some testing has succeeded in mice trials and is now being tested on primates, but it could take a year or two for the FDA to approve clinical trials. I don't know that we have the time for that. Also, if there is a "cure" I am wondering if it will even work fully for Skylar since she has scar tissue already in her limbs and the effects and damage may not be reversible. What if we give her the "cure" and it doesn't work? Or it only works partly? Anyway, I am just waiting on God and not worrying about tomorrow, because it is a mystery and I could go nuts thinking about all the "what ifs" and such. A friend of mine passed on some song lyrics to me and although I am not crazy about the actual tune, I really loved the lyrics:

I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait

Thanks for reading - hope you enjoyed the new pictures :) Peace to you.

A whirlwind of a week...

As we continue to be blessed by the amazing people in our lives, we remain busy...

Friday was frantic - I woke up to a barf dog. I saw him eating grass before so I knew it was coming. It was our first day out of the house since our trip to the hospital two weeks prior. We were on our way to the GI doctor - I was actually packed up and ready to go with Skylar on time! In the car, all of her equipment in tow, taking a bowl of water to Reese (who I put in our neighbor's fenced in backyard) only to find that he had escaped through a hole in the back fence... Crap! I do not have time for this... Luckily, I knew where he typically wanders off to and found him in record time! Back in the house he goes. We were still able to make it to the office building on time. I was in the process of unloading all of her equipment and realized there was no way I was going to be able to carry it all by myself because none of it fit under the stroller (which I should have tested instead of assuming I could at least fit the suction machine under there...) I somehow managed to get everything out of the car and in a manageable position and then I put Skylar in the jogging stroller (since it reclines pretty far back). As soon as I moved her to the stroller, the alarm sounded and there went her oxygen level... I spent about 20 minutes out in the parking garage where it was hot and sticky trying to get Skylar stabilized with just the suction machine. I flagged down a young guy to help me carry her stuff in and find an outlet to use her cough assist (something I couldn't use out in the garage). I sat in the lobby and called the GI office to let them know what was going on and they sent someone down to help me get to their office. Leaving the office was the same story. I dropped the cough assist from waist high onto the asphalt and heard a crack. S*#@! That thing is so heavy - I hope I didn't break it. I swore I would never go out by myself again - especially without a portable power supply and a stroller that would hold more stuff. A van would be nice too. I swung by home, said hello to a friend that had dropped by and since Skylar was in the car already, we decided to try to get to the chiropractor. I should've just called it a day. More dropping her O2 levels in the parking lot, more frantic running around trying to get all of her machines to an outlet and getting her stabilized. Thankfully, the cough assist still worked though it looks banged up some on the side (oops). I got home and got a much needed hug from my husband after a long and stressful day.

Saturday was his turn. I woke up to a pretty arrangement of flowers with a note from Skylar :) Kyle babysat while I went out, spent some gift cards we've had forever, ran some errands, and just experienced freedom. Seriously, that word was flashing in my head the entire day. An amazing sense of freedom. The sun was shining, there was a cool breeze, and I was able to drive without worrying if my daughter's oxygen was going to drop and I was going to have to cut people off to get to the side of the road and suction her out. It was amazing. It was my first real day "off duty" by myself. Kyle did well (I only got one or two phone calls) and he fell asleep as soon as his head hit the pillow. I am pretty sure he now understands why I am so exhausted even though I "don't do anything all day" and I want to go sleep as soon as Skylar's out for the night. He did great though and I was happy he got some extended one on one time with her. Skylar gave him a nice present too because I came home to a bare crib that had been stripped down and I heard the washer going... Apparently Daddy got a big smelly diaper that was a little runny and leaked in the crib, hahaha :)

Sunday we had an interesting sermon about the miracle healing of a man who was paralyzed for 38 years or so and seemed somewhat undeserving... (if you want to listen to it you can go to www.trinityanglicanmission.org and check it out) it made me think about our situation and my last blog post and how no one can really predict a miracle and there's no rhyme or reason to why people get them and others don't. Anyway, it was my mom's birthday as well as Mother's day so we ended up spending most of the day with family cooking out and enjoying our backyard after church. Kyle and I were tired (combined with stress makes us a little grumpy) so as soon as everyone left around 4 or 5, Skylar slept hard, Kyle napped in the hammock on the porch, and I crashed in the bed. We woke up at 9pm, lol, and I made some phone calls to other family for Mother's Day, had a late dinner, and then got a few things done before going back to sleep. So really my Mother's Day was Saturday...

This week has been hectic as well. We had the phone consult and physical evaluation by Babies Can't Wait - a federally funded state program to help babies with disabilities get help in the home. Basically, a physical therapist will be coming to our house to help do some exercises with Skylar (not sure how often) but any little bit will help. We just have to make sure we get on their schedule first thing so they are not bringing a bunch of germs into our home.

We also had a home visit from our pediatrician last night. Skylar has been crying the past two days which is pretty serious for her. She only cries when she has a super heavy diaper or if something is hurting her... so I have been concerned I accidentally broke one of her ribs or she has pneumonia or something like that because she would only cry right before her oxygen dropped or when I moved her chest area. We went to get a chest x-ray this morning and there was some inflammation, but no pneumonia or broken bones which was awesome! The pediatrician said he thinks that the routine we're on is good and it seems that we are managing whatever she's dealing with pretty well. If it gets worse, we'll start her on antibiotics or something, but hopefully it will clear up on its own. Until then, Skylar's little pitiful cries break my heart!!!

He was impressed and shocked we didn't have home help and said that most people would've crumbled by now... Praise God for unexplainable strength, peace, and amazing people in our lives who support us. He's going to work on trying to get insurance to cover a respiratory therapist to come help me, even if just for a few hours a day. YAY! Hopefully that will work out so I can have some time to spend with Reese - our poor neglected whiny dog who just wants to play and run around all day. I'm looking forward to getting some help so I can have time to eat (and not inhale my food any chance I get in between Skylar's routine) or just do "normal" things.

Other updates: we applied for life insurance for Skylar right before she was diagnosed and finally got denied... I think they've been spending the past 4 months trying to figure out what was wrong with her - it was a long shot, but oh well. I'm in the process of trying to get medicaid for Skylar and also apply to a few other programs to get some help financially. We're starting to feel the stress with money, medical bills that have drained our savings, my car repairs, the property we own that we were hoping to build on but don't see how that's possible anymore, etc... I'll be meeting with a girl next week to finalize the fundraiser details for June and will post those soon if anyone feels led to help us out in that way (please don't feel obligated)! Random thought: Can you believe in another week Skylar will be 6 months old?! As always, thanks for reading :)