May 2007

May 31, 2007 (morning)
Dad: We've had a different facility offered to hold Ashleigh's birthday party. Hunter Hills Church is right next to PCA, where we were planning on having it. It's a little bigger, has more parking and overall will give us a more options. All other details are the same as before.

What: Celebration: Ashleigh Turns One!
When: June 2, 2007, 2 pm - 4 pm
Where: Hunter Hills, All Purpose Room (looking at church, go in the right set of doors)
          Address is: 330 Old Farm Ln N, Prattville, AL (map)

We look forward to seeing you all.

May 31, 2007 (morning)
Dad: HAPPY BIRTHDAY ASHLEIGH!

So many different emotions today. One year ago our lives were flipped upside down but at the same time a journey began that would break us down while building us up, cause us to hang on to the smallest threads of hope, inspire us to cherish the smallest of miracles, uproot us while grounding us in faith, and violently throw our emotions from one spectrum clear to another.

But today, a year and many tears and smiles passed, we all get to celebrate the miracle of life. Fact is, we pretty much all take it for granted every day. Reality is we all only have so much time here. The enormous milestone in the life of my daughter today is a reminder. Fight like you've never fought before for the things that unlock your passion for life. The rewards are unbelievable.

Happy birthday baby girl. I love you.

May 22, 2007 (morning)
Dad: We've got a location locked in for Ashleigh's birthday party. Prattville Christian Academy! We're extremely appreciative to the school and to Mr. Mitchell (their President) for allowing us to have it there. It's a great location because it's close to the interstate and easily accessible.

So the details for her party are:

Date/Time: June 2, 2007, 2 - 4 p.m.
Place: Prattville Christian Academy (Prattville, AL, US)

(The link above takes you to a map.)

We hope you can make it. Your unceasing thoughts and prayers mean so much to us - while we were at the hospital and right up to this moment. You have helped us carry the weight during this wearisome journey. I hope you can carve out a few minutes to see the fruits of your faith - Ashleigh! It would honor us to be able to personally thank you.

As for an update on Ashleigh - she's still off and on with a bit of a runny nose and slight head congestion. It hasn't gotten any worse so we're thankful of that. Michelle thinks she may have an ear infection again in her right ear. We'll likely be going to see about that if it continues. I despise the common use of antibiotics these days, but her ears are so small that some of the other solutions that go directly in the ear (and that we used for big sister) aren't practical. Plus Ashleigh is on so many different medicines (but primarily her blood pressure medicine) that it makes it a challenge to add any medicines to the mix for fear of reactions.

At any rate, it hasn't slowed her down much - she's still as active as ever and wants to be mobile. She gets mad at the ventilator circuit and pulls on it. She's managed to disconnect it a few times already. We tell her "no-no" but deep down can't blame her a bit for getting aggravated with it.

We'll know more about her weight and blood pressure status next week as we ride off to several doctor visits.

By the way, we seem to have some stability in nursing at the moment. That's a good thing but I wonder how long it will take Michelle and I to feel the true benefits. We don't quite feel "caught up" yet even though we've had more sleep in the past two weeks than we have in the past two months (seriously). I guess our bodies were/are more run down than we were ready to admit to.

Thanks for your continued thoughts and prayers. One day at a time - don't give up.

May 17, 2007 (afternoon)
Dad: Thanks for the responses regarding the birthday party for Ashleigh. I think we have a time frame in mind, 2 - 4 pm. Don't put it on the calendar just yet. If you can't help yourself, at least write it in pencil. Based on the amount of people, I think we are going to try to have the party somewhere besides the house - and somewhere convenient for those traveling in. Long story short, we'll have to be sure we can find a place during that time frame. Stay tuned. And yes, I know, we're like two weeks and a few days away. These days nothing gets done in our house unless it's last minute!

Ashleigh woke up this morning with a bit of a cough. It kinda seemed like it was sinus related, her chest was clear. Could be related to teeth, could be allergies, could be something else. Other than ongoing new teeth, overall, she's been doing pretty well though.

The parents of another "vent kid" let us borrow this contraption (I think it's called a jumparoo?) that allows Ashleigh to 'bungee jump' up and down. She sits in a seat that dangles from four elastic straps secured to the frame. Her feet touch the ground so she can make the seat part go up and down by bending her legs. It's probably one of the cooler inventions I've seen (it still doesn't beat the endless pool though) - its fun and builds their strength at the same time.

She's getting better and better at sitting up and pulling herself up to a standing position. Still not quite ready to balance herself standing up, but I'm guessing she'll be making some attempt soon.

It's so hard to believe it's been a year. It is so clearly a miracle (to me) that not only is she with us but that she is doing many of the things other babies this age do. It's just incredible ...and a huge faith-builder.

We have three doctor visits over the next two weeks. Thank you all for your continued thoughts and prayers. Hopefully, these visits will bring good news and will all go well.

May 11, 2007 (morning)
Dad: We're still rolling along. Ashleigh appears to be gaining weight - to us anyway. She sure is active. If she is holding onto something, she can just about always pull herself up to a standing position now. She stands for longer periods of time, but still cannot balance on her own for more than a few seconds.

She is also starting to do more gestures with her hands. She's been clapping for a while now, but getting her fingers to interweave and pulling her fingers towards her thumb - that kind of stuff. I'm really excited about her physical development.

She wants to crawl, but all her tubes appear to really hinder that. She has the early motions down, but can't get it all coordinated. We think she may skip over the crawling part. Seems like I've read an article that discussed the importance of crawling first for balance and development of bone and muscle strength, but Ashleigh has never done anything by the book so why start now!

Her eating is still just a slow process. We continue to try new things with her and she does not wretch as much, but still has no interest or desire to get any food into her mouth and swallow it. Creamed potatoes seem to have been the most successful thus far.

So Ashleigh's birthday is coming up soon. Michelle and I have a little 'discussion' going about how many people might actually come. Which leads to where to have it. So I'd like to do a little informal survey and see. We're planning it for June 2 in our hometown, Prattville, AL. Over on the left, there's a poll with a few options. If you don't mind - please let us know. If you would like a "formal" invitation and you think there's a chance that we don't have your address (email or snail mail) - send it over via the contact page and I'll add you to the list.

Thanks for your continued thoughts and prayers for Ashleigh. We greatly appreciate them. She is making progress, but still has much to accomplish.

May 4, 2007 (early morning)
Dad: So much has happened since I've been able to post last. We've been to several doctor visits - a few in Montgomery and a few in Birmingham. Fortunately no more ER runs. The last trip was to Birmingham to see Ashleigh's surgeon about possibly inserting a larger gastrostomy button. In the end, we opted not too. Supposedly the manufacturer will soon be improving the quality of the button that Ashleigh has. Right now, her size is made differently than the larger sizes and has a greater tendency to burst and split - ultimately causing the button to come out as it has twice with us. Generally, the larger the stoma (hole the button goes into), the more leaking. So keeping this smaller size in the big picture should be better if they improve the button. We'll see.

Ashleigh also has been to physical and occupational therapy in Montgomery twice since the last post. The role is different than when she was in the hospital. Now they generally try to teach us more than really work with her. They evaluate where she is versus what the averages are and help us improve in the areas where she needs it.

She is doing well from a physical development standpoint. She's able to pull herself up to a standing position from sitting. She has also somehow finagled herself from laying to sitting - though we haven't been able to catch her in the act. One day I was sitting on the floor in her room working while she was taking a nap. I suddenly heard "ahh". I looked up and she was sitting up in the middle of her crib smiling at me. That's gotta make the dad proud.

She really enjoys standing up now and gets a 'little frustrated' when you make her sit down or lay down - like to change a diaper. Her big sister taught her how to tighten up her face and arm muscles (as if you were straining to lift something) and she now uses that to express her frustration. Early signs of a temper tamtrum I think. She also does it though when she knows she has an audience. I guess because it was pretty humorous to see her do it and she knows she'll get a laugh out of it. Smart little girl, she is.

We are just starting to transition her over to her new formula - Bright Beginnings. It is much more calorie dense comparatively to the Isomil so we're trying to transition her over time. So far so good - no major changes in her stools or gut reaction. She's going to gain weight on this stuff. She looks heavier already. She has gained some weight since the last post. She now weighs 11 pounds 12 ounces, which is about 8 ounces more than she weighed last time. This was on a different scale - but is certainly promising.

She's had a few very minor set backs in her respiratory stature - she's been wheezing off and on. We're not sure if her teeth, allergies or something else is the trigger. Right now, one of her pulmonologists thought it best to be proactive and get her back on some antibiotics. Her secretions we're beginning to thicken and get a yellowish color - indicating infection or at least aggravation. We also cut back on one of her breathing treatment medicines to every eight hours from every six. Atrovent has a tendency to dry things out. Those changes seem to be helping.

She's still generally on the same meds as before. It looks like she'll be on the blood pressure medicine a bit longer. I think we have an appointment with renal in a month or so. Michelle keeps up with all her appointments.

Ashleigh continues to get more teeth. I've lost count but it looks like all but the last few molars are popping in. It's caused her to have some restless nights lately (tonight being one of them). Hopefully all that will be over soon. Despite the progress in getting teeth, shes still not eating by mouth. She is making progress, but it is painfully slow. But progress is progress.

We actually did attempt eating out again earlier this week. You know you're at a strange place in life when "uneventful" is a good thing. This time the dining experience was uneventful. unlike last time, we got to eat and left without a trail of flames left burning on the floor toward the exit.

It's still been hit and miss for nursing help. Mostly miss. This week we'll end up having two nights covered (if all works out as planned). That's better than none, but Michelle and I are still just worn out. We've been submerged back into life and it's constant with no down time. That's what I struggle with the most. I have no time to think ahead - life is very reactionary right now. I'm not used to living that way so it's tough. We've talked about how we can make changes that can help us the most but Michelle and I have not found a common ground yet that works for both of us, Ashleigh and big sister. Regardless, we're hanging in there. And as one of my friends tells me, "Right now, that's a good thing."

We're thinking of having Ashleigh's birthday party on June 2, which is a Saturday. No details on where or other logistics yet. I almost cannot believe the little doodle hopper is almost a year old. Whew, flashbacks of wondering if she would be with us for more than a few months hit me. How thankful I am that she is. It's a reminder that no matter how difficult things seem, you really just have to keep going. You never really know what's on the other side of it - for better or worse.

Thinking of how many of you said prayers and encouraged us along the way (so far - not that the journey is over!) is remarkable. We have been carried through some dark moments by your actions. I hope you each know and fully treasure that. We certainly appreciate your continued thoughts and prayers as well. The storm is not over, but we continue to see a few more rays of light on the horizon.