I'm really going to try!

Since it's January 1st and what else do you do on January 1st but make wild plans for the whole year, here's my goal for blogging in 2011...  I would very much like to post at least once a week.  This is going to be a crazy year for the Perkins family and I would like to use this blog as a way to help keep everyone updated, but also so I can really remember everything that we do.  Since it's been so freaking long since I've posted, I guess I should just do a quick update of what we've up to since the last time.  Bear with me, I'm just going to go with a bullet list. 

* Alison has had her g tube surgery and it has absolutely been the BEST thing that we ever could have done for her.  She was 21.8 pounds the morning on the surgery and at her last doctor's appointment in early December, she was 29.8 pounds!!  That is unreal for Alison!  Before her surgery, it would have taken close to a year for her to gain that much.  She looks so much healthier and for the first time, she actually looks a little chubby.  Her little chubby cheeks are the cutest ever!  Alison is going to a morning preschool program two days a week and it's so great for both of us.  She loves her teachers (and I do too, they are so great!) and I love love love having a few hours to myself to go shopping or just enjoy a cup of coffee.

* Will has changed units.  He is now in the 82nd Combat Aviation Brigade, and seems to be liking it a lot.  He will deploy later this year, which sucks.  Honestly, though, by the time he leaves, we will have had almost 4 years between deployments, which is unheard of in the Army nowadays.  It has been such a blessing to have him here with me during all of the early stages of Alison's diagnosis and treatment.  I'm really not looking forward to him being gone.

* What to say about me?  I'm still staying at home with Alison and having mixed feelings about it.  I love that we are in position to allow me to be able to stay home with her, but it's hard because I have to be honest, sometimes hanging out with a toddler all day long makes me feel like my brain is turning to mush.  I've got some plans for making our days more fun and exciting in the new year and I'm hoping that I'll keep blogging so I can keep you all updated about these plans!

So here's the plan.  Once a week (at least, maybe more), I will post a blog.  I'm hoping that I can get back into the swing of it enough so I can post lots of pictures because really, who wouldn't love lots of pictures of this:

24 Things about my 24 month old

(I'm stealing this idea from my friend Christine because I think that it's so cute!)

Today is Alison's 2nd birthday.  Wow, just give me a sec to wrap my brain around that.  She's TWO years old.  I can't believe that she's only been a part of my life for 2 years.  I seriously can't even imagine what I did before her.  Ok, enough of that..  Here are 24 things about my 24 month old!

1. Simply put, Alison has the most reslient spirit of any person I've ever met. 
2. Alison still doesn't eat much but she loves Pringles.  She will carry around the whole can and munch all day long.

3. Her favorite lovey is "Puppy" (we have really creative stuffed animal names!).  He is a golden retriever type dog that our wonderful German neighbors gave her the day she came home from the hospital.  "Teddy" is a close second, although "Tarheel" (a blue and white spotted puppy she got from the UNC ER) and "Baby Puppy" (a fuzzy white fluff ball that my sister and brother in law gave her) are giving poor Teddy a run for his money.

4. Alison has a very eclectic taste in music, and has since she was an infant.  It used to be Metallica's "Master of Puppets" and now it's Katy Perry's "California Girls".  I can't even begin to tell you how completely inappropriate the video is for a 2 year old but she LOVES it.  Seriously, she can't get enough of it.  We have to watch it at least 10-20 times a day.  Will is usually (always) the one to give in the first time and it's just downhill from there and we have to watch it (or listen to it) over and over and over and over...

5. She has the men in her life (Daddy, Pop, Poppy, Granddad, Uncle Jake, Uncle Patrick, and Uncle G) completely wrapped around her little finger. 

6. She knows the sounds of lots of animals: cow, pig, dog (of course!), cat, sheep, frog, bat, chicken, monsters, horse, and probably some that I'm forgetting.  She also knows what a ghost says!

7. Her favorite show is Jack's Big Music Show but she won't turn her nose up at Sesame Street, Yo Gabba Gabba, The Wonder Pets, and The Backyardigans.  I promise, we try not to watch too much TV during the day!

8. My absolute favorite thing that she says is "heeey Puppy".  It's so darn cute and typing it out just does not do it justice!

9. Alison has started telling us "I love you".  There is absolutely nothing in this world that can prepare you for the first time your baby girl says that.

10. Alison sleeps in until about 10am most mornings, which I cannot even express how much I love.  Sadly, I think that we need to adjust her schedule so she goes to bed earlier, which means that she will most likely wake up earlier. 

11. She LOVES to wear my high heels around the house.  She also likes to push her new doll stroller around while wearing them but she very rarely has a doll in it.  Usually it's Puppy, although this evening she was pushing a jar of M&Ms around.

12. Alison is starting to learn the tune of songs and sing along with us, which is so much fun!  She's got the beginning and end of ABCs down but has some trouble with the middle.  She also knows "Itsy Bitsy Spider" and knows all the hand movements.

13. She has her own "wing" of our house.  At one end of the house is our bedroom and at the other end, is her bedroom, playroom, and bathroom.  Her rooms are the only rooms in the house that we've painted (which makes me sad but we just cannot agree on anything for the other rooms!).

14. We set up this really great playroom for Alison with ALL of her toys in there, somewhat neatly organzied, and what does she do?  Pull every toy she has back out into the living room.  Oh well.

15. When she is tired or stressed, she will chew on her Puppy.  Her favorite chew spots are his tail and nose. 

16. Alison can spot a puppy just about anywhere.  It doesn't matter if it's real or not, no matter how big or small, she can pick it out. 

17. She can sort of count to 10.  She starts with 2 and skips from 7 to 10 but that's not bad!

18. She has the best sense of humor.  She knows what makes people laugh and she loves doing it!  She has perfected her fake "I don't know why you're laughing but I'm going to laugh along with you" laugh. 

19. Her belly is so ticklish.  I love love love her sweet laugh when her belly is tickled.

20. She is so used to being the center of everyone's attention that when she's not, she doesn't understand what's going on.

21. Alison's favorite playground toy is the swing.  She loves it so much that her Granddad and Dad made her her very own swingset in our backyard and she cannot get enough of it!

22. She can take her enzymes whole now.  We just drop the whole capsule into a spoonfull of applesauce and she swallows the whole thing!  I would love for her to be able to swallow them with liquid by the end of the year but I'm not going to push it.

23. When we hook up her feeding tube at night, she gets so excited to help.  She loves to open her button and help me attach the tubing. 

24. She has made every day of my life for the past 24 months (and 1 week) an adventure.



(I know that I should have lots of pictures to go along with this but I'm tired.  I will try very hard to do another post in the next couple of days with lots of updates and pictures!)

Community

I know that I haven't posted in a very long time and I'm not going to insult the few people who do read by telling you that I'll try to do better.  However, I've had some thoughts floating around in my head all morning that I wanted to get out. 

I try not to post too much about Alison having CF (or at all, apparently!).  While this is certainly a part of her life, and our family's life, it's not who she is, or who we are.  Alison is so much more than the doctor's appointments that she goes to, the medicines that she takes, the treatments that she has to do, and the struggles that she endures simply to eat and breathe.  Alison is also the happiest 23 month old I've ever known.  She is silly and funny and so smart it astounds me sometimes.  She loves to clomp around the house in high heels that I've only worn three times.  She will tap her chin and say "hmmmm" when you ask her a question.  She carries around a Pringles can and eats them all day long.  She adores puppies and anything cute and cuddly.  Her favorite thing in the whole wide world, besides her Daddy, is her puppy that our German neighbors gave us the day she and I came home from the hospital.  She is a daredevil and is so excited that she now has a swingset in the backyard, she can barely stand it.  The list could go on and on and on, but I'm sure you get the idea. 

So even though I try not to post about Cystic Fibrosis too much, that's what this is about.  CF is a very isolating disease.  As parents, we're told that there needs to be at least 6 feet between our CFer and other kids with CF and this is a rule that, of course, extends into adulthood.  So by it's very nature, we cannot have playdates with other families who could most easily relate to what we're going through.  Alison will never be able to go to a summer camp with other CF kids and feel normal taking her many pills and doing her treatments.  She will always be a little different and she won't be able to sit down at a coffee shop with someone who is going through the same thing and talk about it.  This absolutely breaks my heart.  But, there is one saving grace.  The Internet.  This one tool is connecting CF families to each other and giving such hope and inspiration to people who are struggling through the many issues relating to CF.  This is truly an amazing community to be a part of.  And while it's certaintly not one that I would hope for anyone to join, I'm so thankful that we welcome others in with such open arms and hearts. 

There is a mother whose blog I've been reading for a couple of months whose 7 year old son with CF and Prune Belly Syndrome recently passed away.  This was a huge blow to the entire community but at the same time, we have all wrapped our arms around the family in prayer and celebration for this young man's life.  Another CF Mommy started a campaign to raise funds to help for this family.  The entire CF community rallied around this family and raised over $10,000 in just a few weeks.  Absolutely amazing. 

So this a big thank you to the entire CF community that I am so proud to be a part of.  Thank you for being there for me and my daughter.  Thank you for answering all my questions, no matter how silly.  Thank you for encouraging me and giving me such hope for my daughter.  Thank you.

Odds and Ends

I know, I know, I've slacked off again.  Oh well.  I like to think that those of you who actually read this know me and know that I'm not the most together person in the world so the fact that I go months between blogs shouldn't really surprise you!!  So here's what's going on with us...

Alison's surgery went really well!  It'll be 2 weeks tomorrow since she had the surgery and we've already had signs that her hearing is better, which is such a relief.  Unfortunately, the broncoscopy showed some things that we weren't really expecting but she's on a pretty strong oral antibiotic to try and knock that out.  Another unfortunately is that the first antibiotic (Augmentin) gave Alison the worst diaper rash she's ever had, including the horrible diaper rash she had the first time she was on Augmentin.  It's getting a little better now that she's is taking a different antibiotic, and the bonus is that she takes the new one (Omnicef) much better than the Augmentin. 

Alison has entered the toddler stage, with all of the trials and challenges that go along with this age.  The most troubling for us right now is her continued refusal to eat, although now she's starting to refuse to take her meds.  She's been so great about taking all of her many medicines up until about 2 weeks ago and every day it seems to get a little worse.  She takes at least 2 different medicines with each snack and meal so this is a pretty big deal for us.  She also is still eating very little, which I know is a typical toddler thing but for Alison, it's a much bigger issue because she's already so small.  The past 2 times we've been to see Alison's CF doctor at UNC, the possibilty of a feeding tube has been brought up.  I'm sort of resigned to the fact that she'll probably have one in the next year and while it still doesn't make me happy, I know that there's only so much I can do for her.

I mentioned briefly that we've already seen evidence that Alison's hearing is better.  The best indication that the surgery did what it was supposed to do?  Alison is making all sorts of animal sounds!  Animals are her absolute favorite thing.  She won't have much to do with baby dolls but she'll play with her stuffed animals all day long.  Before the surgery, she wasn't able to "meow", "ruff", or "roar" because she probably couldn't hear the sounds when we made them.  She was only able to mimic the way our faces looked when we made the sounds (which was pretty cute too!).  Now, she can meow, ruff, and roar with the best of 'em!!  Oh, and her little roar is just the cutest thing EVER.

Son of a biscuit eater!

Damn it!  Stupid Blogger did it to me again!  I thought that it was just a fluke so I uploaded 5 or 6 pictures of Alison for an update blog and only this one showed up!  Oh well. 

I know that it's been a really long time since I've written anything so I just make a list of all the stuff we've done (that I can remember) and then elaborate on a few of them.

Hosted Thanksgiving dinner for the first time

Did lots and lots of Christmas celebrating with lots and lots of family

Had a very quiet New Year's Eve with friends from Germany

Went to Greenville to celebrate my sister's 25th birthday

          -Discovered that Alison loves Japanese steakhouses (you know, the ones that are a show)

(wow, either we're really really boring, or my memory is completely shot!  I'm not sure which one I prefer!)
Went to Iowa to see Will's family for a couple of days
          -Flew without Alison having her own seat and it wasn't a complete disaster!
Took Alison to the ER for the first time (she had a super high fever, everything is good now)
Said goodbye to Will for the month of February (he'll be back soon!)
Started new medicines for Alison (more on this later)
Made my Dad his very own cake wreck for his birthday
Decided to go ahead with surgery to have tubes put in Alison's ears (more on this later also)
Alison got her very first flower delivery for Valentine's Day (from Will)
And tomorrow, I will (hopefully) enroll Alison in the 2 day 2 year old class at her school.  TWO YEAR OLD class.  How in the heck did this happen?  I still can't believe that she's almost 18 months.

So now about Alison's health.  Overall, things are very good.  Her lungs are still sounding nice and clear, which is always a great thing.  Her weight, however, not so good.  She has stayed right at the 19 pound mark for months now and her doctor decided at her last clinic visit that it was time to try something new so she's now taking an appetite stimulant (Periactin, in case you were wondering) to help, well, stimulate her appetite.  So far, it seems to be helping a little bit but the real proof is in the weight and at her monthly weight check at Womack today, she was still right where she's been all along, between 19 and 20 pounds.  But, it's only been a week so we'll see how she does over time.
We also had a visit to the ENT clinic at UNC.  I was not at all impressed with the clinic or the doctor we saw but the outcome was that Alison will be having tubes put in on March 15th.  She'll also have a broncoscopy at the same time, since she'll already been under anesthesia.  The reason why we went there was because her pediatrician here in Fayetteville, her pulmonologist at UNC, and the doctor she sees for the study we participate in have all made comments over the past 4 or so months about the amount of fluid in both of Alison's ears.  She's only had 2 infections that we know of but the fluid just doesn't seem to be clearing up and the concern is that it's affecting her hearing, which is affecting her speech.  The way it was described to me is that everything sounds a little muffled, like she's underwater.  And if you've heard Alison talk, you know that's exactly what she's hearing because she sort of talks that way too.  She has yet to say a complete word.  Most of the words that she has are just the first sound of the word.  For example, she won't say Daddy, she says "da" or for Pop (my dad), she says "pa".  It's not likely that any of the hearing damage that she's experiencing is permanent, which is good to hear. 
What was so frustrating about the ENT clinic was that the doctor we saw was not at all interested in what other doctors observed in Alison.  She wanted to be the one to see the fluid buildup over time, rather than take my word for it.  I wasn't willing to wait until April, just to be told that yes, she does in fact need tubes, when we could go ahead and do what we know needed to be done.  So, she's scheduled for surgery in March.  I know it's an incredibly routine surgery, but I'm still nervous for my little girl!

So that's what's going on with us.  I would love to say that I'm going to be better about blogging, and I'm really going to try, but I'm not making any promises!

Well shucks.

I had this BIG comeback blog planned, lots and lots pictures, tons of details about what's going on in our lives, that sort of thing.  But...  it's been so long since I've blogged that the "Compose" section has changed and I'm not sure what happened to the 20 or so pictures that I thought I uploaded.  Somehow, this is the only one that survived

Luckily, it's a pretty great one.  That's Alison and me on Valentine's Day, with the flowers and balloon that Will sent us from Kuwait.  (Oh by the way, that's where he is right now.  He should be home soon.)

Once I stop being so ticked off at Blogger, I'll try again with the picture post.

14 months (and a couple of days)

Whew, what a crazy couple of weeks! Will has been in Egypt for some sort of training exercise so it's just been Alison and me here at Casa Perkins. Well, when we've been here, that is. We've been burning up the road between Raleigh and Linden the past couple of weeks. Between my Mom breaking her leg (it's sort of funny now, not so funny when it happened) and being insanely lonely, Alison and I have been spending lots of time in the loving home of my Mom and Dad. So, because so much has happened since I've written a (non-depressing) post, here are some highlights...

* Mom broke her leg. She spent 3 weeks in the hospital and still has a long road of recovery left but she's getting better everyday. Now we all feel more comfortable calling her gimpy.

* Our septic tank filled up. It turns out that it's never been emptied in the 5 or so years since the house was built so it was time. That doesn't make the crap filled tub and shower any more fun though. Luckily, my super nice neighbors were able to give me the name and number of the person who took care of their tank and all was well the next day. I'm so sick of poop.

* We finally heard back from UNC about Alison's culture results today. The treatment is that we have to add an inhaled antibiotic to her treatment routine twice a day for three weeks. Based on the past few days, this is not going to be a fun addition.

* Alison had an appointment with her local pediatrician yesterday. Her ears are clearing up and draining the fluid just fine so there's no need for tubes right now.

* We went to the NC State Fair with my Dad. I loved going to the fair growing up and was so looking forward to being able to take Alison. She's still a smidge young but we had a great time!

Alison showing Aunt Lauren the adorable bunny rabbits.

Awww, look at the baby goat (or maybe it's a sheep, I'm not sure!)

Alison loved riding the rides! She's such a daredevil.

* Raleigh isn't the only place we've been traveling too. My youngest sister, Gwen, moved to Rocky Mount at the end of the summer and our middle sister, Lauren, and I decided that we needed to invade Gwen's new place and have dinner together. So on Monday, Alison and I got in the car once again and made the trip up to Rocky Mount. We had a great time, even though I wasn't as impressed with the restaurant we went to as Lauren and Gwen were. Oh well. The company made up for it!

* Will came home this morning. This was the first time he's been gone for any length of time since Alison was born and I have to admit, it was harder than I thought it was going to be. I am definitely NOT cut out to be a single parent! We were both very happy to see that Alison had no problems adjusting to Will being back home. Sure, he was only gone for a little over 3 weeks but that's a long long time in toddler time and we weren't sure how she would react to him since she's gotten so attached to me.

*********

Monday was a BIG day for little Alison. It was her 14 month birthday! Here are some things that she's doing now...

* Alison started school! I have been desperate for some time to myself, especially with Will being gone now and possibly more later, so on the recommendation of some ladies from my MOPS group, I checked out a Mother's Morning Out program at a local church. Monday was Alison's very first day and she did so great! She'll go from 9am-12noon on Mondays, which is good because it gives me time to do whatever I want for 3 whole hours.

Where are we going Mom?

All right, I've got my kitty and I'm ready for school!

* Alison has a new tooth. I noticed today that she is getting a third tooth on the bottom front, bringing her total numbers of choppers to 7. I guess this explains some of her crankiness the past few days. I didn't even think that it could be her teeth because she had SIX teeth come in all at once and barely batted an eyelash!

* Her new word is "Pop", although it really just sounds like "pa". Still no progress on saying "ma

ma".

* Alison's most favorite toys right now are her books. I am so thankful that she loves to read. Will and I are both big readers and it was so important to me to be able to instill a love of reading in our kids. If she has a willing reader (usually Mimi!) then she'll listen to the same book over and over and over and over again.


* Poor Alison has inherited my clumsy gene. She was trying to make her way down the steps leading down from our front porch and silly me thought "hey, she's never done this before. Let's see if she can do it". This was the result...

Every day with Alison presents a new challenge but each also brings us a new joy, a bigger smile, a louder giggle, a sillier face that she's learned to make. We are so thankful to have her in our lives. We love you baby Alison!