Better late than never

With all the beautiful photos we've been posting you'd probably never know that Alex had pneumonia. A couple of nights before Thanksgiving Alex spiked a fever of over 103 degrees and had an extremely high heart rate so we made an emergency trip to Children's in the wee hours of the morning. After 12 hours of blood work, trying to start an IV, an x-ray, MRI and consulting with a bajillion doctors we were sent home with some antibiotics. Let's just say we had a lot to be thankful for as we celebrated the holiday with family and friends.

We also increased Alex's growth hormone so we hope to see some growth spurts soon. Endocrinology did some blood work recently just to make sure they weren't missing anything and to make sure things like her thyroid were functioning properly before deciding to increase the dose. Other than that, her eyes are looking much better and she's been doing great. She's been talking up a storm and repeating EVERYTHING. Our little Ryan is growing by leaps and bounds and doing great too. She usually only wakes up once a night to eat and then goes back to sleep like a good little baby =)

We've been searching for a new nanny and that process is always interesting. Let me back up a bit. I'm really excited (ok beyond excited) to share that I was accepted into nursing school. It's an accelerated BSN program at the University of Colorado Denver that will have me on my way to becoming an RN in just a year and a half. As if this wasn't enough to add to my plate, I just started a new job last week at The Children's Hospital. I'm working as a clinical assistant on a med/surge floor which just happens to be the floor Alex stayed on for most of her inpatient visits. It's a part time flex position designed for nursing students so I can work anywhere from 1-3 days a week depending on my school load.

Back to the nanny search, our interviews are always interesting. I interviewed a women and explained very clearly (I thought) in both the job post and in person that Alex doesn't walk and at the end of the interview she grabbed Alex's feet and told her it's good that she wears socks with non-slip sticky dots on the bottom so she doesn't slip on the hard wood floors while walking around. Needless to say we didn't go with her. We did find someone who is a great fit and stuck around even after both of the girls decided to have meltdowns during her interview. We are relieved to have a sitter for the girls and are just trying to keep up with our ever changing schedules.

I actually started this post at the beginning of December and am just now posting it. It seems the holidays are always such a crazy time of year. Hope everyone had an amazing Christmas and we'd love to hear from you so don't be afraid to leave a comment =)

Happy New Year!

We just can't take a bad pic of these girls...

More pics of sissy

Just playin' around with the camera this morning with some good natural light.

Fall Festival

pumpkin patch

Barrel Ride

Alex & Nana Carol

The Diffs

Smile

Petting Zoo

Thought I'd post some pictures from a fall festival we went to last month. Denver saw it's first snow of the season last week so our beautiful fall days are numbered. Time just seems to be flying by. Ryan is already 8 weeks old and getting so big. She got her first cold over the weekend and we all seem to be passing it onto one another. Nana Carol left last week and it's been a huge adjustment without her. She is such a selfless giver and willing to help out with everything and never expects anything in return. We miss you Nana and hope we will be as good of parents as you are.

Getting messy

Note the new accessories she's sporting in her earlobes, thanks to her Nana.

Alex playing with shaving cream during OT (occupational therapy) today

Got a new camera

So I thought I'd post some of the test shots we took while messing around with it. We love it already. In fact, it was seeing the great pics on most of our friends' blogs that made us feel like we needed to step it up a notch ;)

Alex's new chair

(It's actually a loaner until we get the one we ordered

through medicaid over 6 months ago)

The power of prayer

October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:
1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

The new Sissy

Our littlest Diffee is finally here and we couldn't be happier. Life has definitely not slowed down for us. Between Alex's therapies, appointments and keeping up with a newborn we are busier than ever.

We've had lots of help from the fam and don't know what we would do without them. I ended up having a c-section which is a big deal having an almost 20lb toddler at home. I was trying to avoid the c-section but Ryan was really cozy and proved to be a true Diffee by showing up late. I was one week over due and after an ultrasound to check on the baby, I was told my amnio fluid was too low to continue my pregnancy and I would have to have a c-section that evening. Ryan and I made it through the surgery without any complications and she is perfectly healthy. We are absolutely in love with her and in baby heaven :) I love newborns and being home with her and Alex has been amazing and something I don't take for granted. As you can imagine, our experience with Ryan has been incredibly different from Alex's and to top it off, they couldn't be more opposite. Alex is our calm child and Ryan is rambunctious. Alex is always hot and Ryan is always cold. Ryan loves to be held and cuddled and Alex was never much of a cuddlier.

Alex has adjusted well to her new baby sister although it was a little rough at first with mommy and daddy giving someone else so much attention. Now she reaches out to touch sissy and says she loves her which is so sweet. Alex's eyes are getting better but still not completely cleared up. She had blood work done last week that was ordered by Endocrinology to see why we haven't seen a spike in her growth. She is growing, but not as much as she should be with the growth hormone she is taking. We are waiting to hear back on the results this week. Other than that, Alex has been in good health and working on her therapies. We have more pics to come but here are a few for now....

Sweet baby Ryan

Proud Daddy

So much hair

On our way home

Big Sister

Momma is in love

New sister in town

Join us in welcoming Alex's new baby sister, Ryan Nicole Diffee. 6lbs
13oz.

Happy day :)

Folks Festival and a busy 2 months

Folks Festival 2010

It's been a busy two months and it's long overdue for an update. Let's start with Alex. Our baby girl turned 2 years old since our last post. She is growing up and really looking more and more like a little girl everyday. She also sounds like a little girl and is saying so many new words. Her favorite word is still hi and she loves to repeat things mama and dada say, even the grunting sounds mama makes being 9 months pregnant and picking up things.

It took Alex 5 weeks to get over her awful summer virus we mentioned last time and we are happy to report we stayed hospital free. We squeezed in a long weekend trip to a music festival (near Boulder, CO) before she came down with another cold but she kicked that one in about a week. Bad news is she developed styes in her eyes that got extremely infected the past few weeks. We've seen numerous doctors and specialists and one doctor who was close to retiring age told us these were the worst styes he'd ever seen. After numerous attempts of antibiotics, ointments and eye drops we are back to hot compresses.

We moved into our new house at the end of July and are still working on getting settled in. It's been a lot of work to say the least and with both Jimmy and I working full time and getting ready for baby #2 it's been a slow process. We also had to set up all new therapist for Alex since we moved out of county which I was nervous about but they all seem great and we are looking forward to working with each of them.

As of today I'm 4 days past my due date and we are really anxious to meet our new addition. Guess she is really cozy and not wanting to enter the world quite yet. We'll keep you posted :)

Alex turns 2

Everything changes, nothing remains without change - Buddha

One of the things we've heard over and over since we found out Alex had SB is we'd have good days and bad days. She'd be more like a typical child than not and we'd have challenges just like any other family, however ours would just look a little different. I think we do a pretty good job of focusing on the good things and we've learned to appreciate smaller measures of progress Alex has made despite the fact she has not hit many major milestones, like sitting up on her own or crawling. I feel like we've come up against a lot of challenges in the past few months and with a new baby on the way and a lot of change ahead, I can't help but feel anxious.

We recently had SB clinic and a lot of different things were brought up regarding the next couple of years. As the various doctors visited with us a lot was thrown around that made me feel that same uneasiness I felt when we were first learning Alex had SB. I remember the docs talking with us about fluid in the brain, surgeries, cathing, bowel issues, limited mobility and all the scary things a parent should never have to hear before their baby is born. This time at clinic different procedures were brought up, more surgeries and just hearing a doctor mention a 10 week body cast for one of the procedures was enough to take me back to that familiar place of the unknown where the fear sets in. I think in many ways we've gotten comfortable with Alex's care and even things like cathing seem normal and something we don't even give a second thought to. As Alex gets older there are a lot of new challenges she'll face, especially as we strive for her to be as independent as possible. For now, we just wait to see how her development and growth plays out. We've learned to find peace in taking things one day at time and doing the best we can for Alex each day.

So what else is new with us...well...we are getting ready to move at the end of the month (we love moving when I'm very prego). We've been spending a lot of time getting our new home ready and just as much time at the doctor's office I feel like. Alex came down with a really bad cold at the end of June and can't seem to kick it. I was sure she had a UTI on top of it on two different occasions and even took her to Children's ER one night and both times they sent us home with negative results. I was starting to think I was the one who needed checked out. We started some antibiotics yesterday for her cold so hopefully she starts to feel better. We could all use some good sleep.

The pic to the left was actually taken this winter. I had one from last week, however it turned out really blurry. When Alex has to get a chest x-ray they put her in this contraption called a pigg-o-stat and the goal is to get a good image of the lungs full of air. This requires either a really deep breath or better yet, crying. Alex thinks it's funny to be in the pigg-o-stat and we never end up getting good images of her lungs. The radiologists say they've never seen anything like it. They always warn me that kids get really upset in it and after a few minutes of Alex being in it, they look at me puzzled and ask what I can do to make her cry. This last time I said let me try walking out of the room and as I looked back I could see Alex's little hands waving goodbye to me. Gotta love it :)

It's absolutely beautiful and the weather is perfect in Denver this time of year. Why does it have to go by so fast? We took all these photos this weekend and we've been so busy it's been the first time we've been out to play.

We managed to squeeze in 3 out of state trips this past month. Actually, one of them I went to visit my old roommate in Cali for a girls weekend and Jimmy had a boys weekend in Ft. Collins. Alex hung out with her Auntie and Grandma while we were gone. We were home for a few days and then flew out to Tulsa for a week to be with family and friends. As you saw from our last post, Bud (Jimmy's step dad) was shot and killed during a robbery at the restaurant he worked at. It was a blessing to have the entire family together (and it's a BIG family) and witness the beautiful acts of kindness and blessings that often come after a tragedy like this one. It was bittersweet as we celebrated and mourned a life simply cut too short for such a senseless crime. After we returned home, we took off shortly to a weekend wedding in Ft. Wayne. Guess we had to get in all our plane trips before the big 2 comes up and we have to buy Alex her own plane ticket.

Alex has been in good health and although she has not grown very much she is sure turning into a little toddler. She has actually grown a little length wise but has lost most of her baby fat. She is getting so skinny (no weight gain in a year) so we are working on putting some meat on her. I'm sure Alex won't mind getting some homemade creamy mac and cheese instead of lean chicken with veggies for dinner :) She's doing more signs and saying hi to everybody she sees, even if it's on TV. It's too cute. I think she is preparing to be a big sister even though she doesn't know it yet. Yep, we are expecting a little girl this September. We are very excited!

Love,
The Diffees

Alex loses her "Popop Bud"

It's with great sadness that I post this. Alex's grandpa, my step-dad, was shot and killed in a robbery at the restaurant where he worked as a cook in Tulsa. Please pray for our family.

http://www.tulsaworld.com/news/article.aspx?subjectid=11&articleid=20100521_11_0_Police50618

http://www.newson6.com/Global/story.asp?S=12519763

FUNdraising time for Alex & the SBAC

It's time again for the SBAC's Walk-N-Roll for Spina Bifida. The event is Sunday May 9th (Mothers Day). We actually plan to bring Alex this year - we couldn't last time since she was in the hospital.

If you are in Denver, we'd love for you to join/sponsor us. 70% goes to SBAC, and 30% into a fund for Alex to provide equipment, therapies, camp, etc. (If you pre-register for the race by 4/23, you're guaranteed a t-shirt and a reduced registration fee)

View our fundraising page with more info on it by clicking the button below:




Also...here's the latest video of Alex and her new signing skills - well...sortof.