Hope Alexandra Diffee

Waiting for an appointment

2012-01-23T11:01:00.001-07:00

Waiting for an appointment

2012-01-23T10:55:00.000-07:00

Alex is doing much better and she's almost over her latest cold. She tested positive for rhinovirus again (common cold) but luckily was able to fight it off at home. She says "hi" to everybody.

Lock Down

2012-01-12T21:57:00.000-07:00

We've been home for over a week now and have been busier than ever. Alex hasn't come back down to her oxygen baseline requirements so we've had several outpatient visits to get things checked out. Then on Saturday night she became congested once again and we are suspecting a new cold. Poor thing just can't catch a break. We are waiting to see if a nasal swab she had done shows a new viral infection. She's managing ok at home but we've had a couple of close calls and have our hospital bags packed just in case. Needless to say, Alex will continue her hiatus from school and we are going on lock down for awhile.

Nana Carol is here and the girls couldn't be happier. We've been playing "catch up" every since Alex came home. We've been busy scheduling scopes, clinics, studies and follow-up appointments with several different specialties. Because Alex was inpatient status, she was discharged from her home physical and occupational therapies and we are in the process of getting those set back up again. Always a lot to do after a hospital stay. We had our Christmas celebration at home this past Sunday and it's been back to the grind ever since.

Home at last

2012-01-02T21:40:00.000-07:00

Havin a great day

2012-01-01T16:28:00.000-07:00

Alex has been doing great, and she's able to get up and around in her
wheelchair. They're saying if she keeps doing this well, she could get
out as early as tomorrow.

"Everything sounds good. Let's get out of this ICU"

2011-12-31T11:15:00.003-07:00

Alex is getting back to her normal sassy self and is telling the nurses to "get back to work." her Oxygen needs are decreasing significantly, even while she's sleeping (which has been the biggest problem so far).

So the decision has been made to move her out of the PICU and up the the regular patient floor. So we're not exactly checking out, but def moving up.

Thanks for all your prayers and support. Especially want to send thanks to everyone who's helping us watch Ryan and Alex during this time: Alicia, Kathleen, Cat, Marissa and the N- Lo's (and my mom for flying up to help next week). We couldn't do it without you.

Spa day

2011-12-29T15:27:00.001-07:00

Alex is doing better today, although she's back on the steroids, so we're giving her some spa treatment to alleviate the 'roid rage.

up & down

2011-12-28T17:30:00.000-07:00

happy girl awake

Alex was taken off the BiPAP this morning so we could get her up in a chair and moving around. She enjoyed this (considering she's been laying in bed for over two weeks) and her carbon dioxide level did come down some late morning. She's doing great while awake but sleeping is a whole different story. It's as if her little airway collapses when she falls asleep and air is not moving around the way it should. The BiPAP helps keep her airway open or at least that is what it's supposed to do. They've been having issues finding a mask that fits well and finding settings that sync with her breathing to help her. If it's working against her own breathing, it can actually feel like it's suffocating her. We are also starting a course of steroids which will hopefully help with inflammation but she does have the "behavior" side effects as they like to call it which really means she just goes crazy and is a mess.

The stress levels are at a high and seems we are moving in the wrong direction. The hard part is so many things are being pulled out of the hat with the hope that something will help but none of them are without consequence. Alex handles all that is thrown at her like a brave little soul that she is and hardly ever puts up a fight. When she was up in her chair the only thing she wanted was to go say hi to those outside the glass door. She really is so sweet even when she doesn't feel good.

big bad BiPAP

A nighttime struggle

2011-12-27T01:00:00.000-07:00

It's just after midnight and I feel like I'm having déjà vu. Alex got moved to a different room in the PICU tonight so we are settling in again which reminded me of getting transferred here two weeks ago from the floor. Her carbon dioxide levels are climbing again just like last time and she's is on BiPAP again which was the case right before she got intubated. It's a Tuesday, same as when she was admitted and so a lot of the same staff are working and we have the same nurse and respiratory therapist as we had the night she was transferred to ICU. This definitely makes for a night of little sleep and worry of reintubation.

The docs think she is obstructing when she sleeps and although the secretions are thinning out, she still requires a ton of suctioning which could also be contributing to her struggle to breathe at night. I'm not sure what this means for the morning and days to come but we should get more information during rounds in the morning. Hopefully she just needs a little bit of extra support while sleeping and this doesn't necessarily mean we are taking a big step back or her condition is getting worse. She's been in good spirits and slowly weaning down on her oxygen requirement with reasonable carbon dioxide levels until the spike this evening. We'll keep you posted as we learn more.

Christmas Day

2011-12-25T11:12:00.006-07:00

So we're gettin' through another day and Alex is an emotional roller coaster. She's on a steroid that makes her go from laughing to bawling to sleeping to crying again. It's awesome that she is able to laugh and talk in her little raspy voice, but unfortunately she's doing more crying than laughing. I really hate when she gets put on drugs with psychotic side effects. And half the time the drugs are just an attempt at treating some random symptom which they aren't even sure about. But I won't go on about that. I'm just happy she's off the ventilator.

We had a visitor today. Jenene came and brought presents, and Alex was really happy to see her. Hopefully Mommy will get to come up, but finding someone to watch Ryan on Christmas day is next to impossible, so we'll probably just have to wait until later tonight or tomorrow. So today's certainly bittersweet to say the least, but we really have a lot to be thankful for.

The act of spending the day together as a family opening gifts and whatnot has become what most people consider a proper Christmas, but it really is so much more than that. Traditionally it's a celebration of the birth of Christ and everything he stood for, whether you have a certain number of family members together or not. We have so many days that we get to spend together out of the year that being apart on this particular day is no really no big deal in the grand scheme. It's all about your attitude, and if there's one thing I've learned from Christ is humility. We don't "deserve" to be physically together on this particular day. We really have a great life and incredible love that we share, and that's more than enough to sustain us. The small sacrifice we're making for our unbelievably beautiful and strong daughter pales in comparison to the one Christ made by giving his entire life to show his love for humanity. Now that's a meaningful gift. And the more I think about that, the more I realize that this is what Christmas is really all about.

"Merry Christmas everybody"

2011-12-24T23:10:00.002-07:00

Alex is just off the ventilator on Christmas Eve and wants to spread some Christmas joy with her newfound voice.

A breath of relief

2011-12-24T13:01:00.003-07:00

She's off the vent now.

Christmas Eve Blessing

2011-12-24T12:10:00.000-07:00

Alex is getting extubated this afternoon. Pray it goes well. Yay!

-Jimmy

----
Sent via iPhone

Slowly but slowly

2011-12-23T20:37:00.001-07:00

Just thought we'd give an update on Alex's condition. It's about 100% sure that we'll be spending Christmas at the hospital - as the extubation process (getting her off the ventilator) takes a bit longer than we'd previously thought. The reason for that is the last time Alex was intubated, she yanked the tube out herself. So the actual process of weaning involves lots of incremental tests to see how she handles breathing on her own. So she's up to 2 hours at a time with the vent doing no breathing for her, and she usually falls asleep during the test. That's probably because it's the only time she can fully relax - just imagine how well you'd be able to sleep with a machine pumping 12 bursts of air into your lungs every minute. But she does tolerate it really well, breathing on her own just fine and not really having to work at it. But they also do a blood test to see how high her CO2 levels are, and they're still pretty high (remember that was the main reason she was put on the vent in the 1st place). So they're not in a hurry to make any decisions right now.

So what does that mean? We're not quite sure, but it could be as early as tomorrow that they extubate, or even longer depending on the CO2 tests and her level of secretions. But we'll certainly let you know as soon as we do. Of course, being off the ventilator doesn't mean we get to take her home - we just get moved out of the ICU and onto a different floor until her oxygen needs are back to normal. So we're just playing it by ear, as usual.

Merry Christmas eve eve.

The snow pile

2011-12-22T15:43:00.000-07:00

Alex's Christmas Tree

We visited the "snow pile" yesterday which is an annual event here at the hospital where parents of hospitalized kids get to pick out gifts for their child and their siblings. The hospital truly does a great job of lifting spirits and bringing the holidays to the children. It was literally a snow pile of toys, books, clothing and stuffed animals. It brought tears to my eyes to walk around the shop and see the donations that would help make this holiday special for Alex and all the other kids who will spend Christmas in the hospital. The wrapped presents are now under Alex's own little tree in her room, thanks to my grandma who thought to bring a tree and Cat who decorated it.

Just one glimpse of the "snow pile"

Ryan also had fun in the snow pile at home. We got 12 inches of snow at our house so as you might guess it's going to be a white Christmas, but sunny and a high of 53 degrees. Yep, a true Denver Christmas.

Sing the "Applesauce" song

2011-12-20T10:38:00.005-07:00

Applesauce, applesauce. Made for a rhinoceros.

Applesauce, applesauce - do not put it in your schnauze.

Applesauce, applesauce. Sell it for a really good cause

But what I love about applesauce...is that it tastes delicious.

Alex loves the applesauce song...it's probably her favorite (right now). Of course it's just something I made up when she was eating applesauce one day. She has a tendency to request that I sing the "[random object] song" and I have to make up a song about it on the spot. But Applesauce was a hit, and has since been the most requested song. I even came up with a second verse, which was actually much better than the first, but I can't remember it for the life of me.

Then there's the game of "backwards/forwards." If you've been around her at all in the last several months, you've undoubtedly been sucked into this one. She says "I want it please" (like she starts every conversation) then "go backwards." I believe Marissa (her sitter) started it by walking backwards and pretending to collide with whatever was behind her. Alex cracked up, and naturally requested "go forward," and Marissa obliged. Then came "fall down" (among other commands). I'm not sure what it is about this simple game that Alex loves so much. Always the overanalyzer, I'm thinking it stems from her lack of physical control over her own body. So she gets a kick out of being able to pull other people's strings until they crash into the wall or floor. The game spread quickly, and her Nana added the effect of counting backwards and forward while marching (always an educational component in this household). Alex never tires of it, and the ones who indulge her the most - quickly move the top of her favorite people list.

I'm sure every parent has similar games they play with their children. The toughest part of this hospital stay is that Alex can't talk, which means no requests for silly games or songs. I still try doing them for her, but unprompted it's just not the same. And she can't laugh, so it's entirely anticlimactic when I finish performing. I'm sure she enjoys it, but the only thing I interpret from the look in her eyes is "I want this tube out of my throat." Sorry, baby. Just a little longer.

The question on everyone's mind is how much longer? The good news is that she is making progress now. They're slowly dialing down the ventilator settings so Alex is doing more of the breathing, and she's tolerating it well. The bad news is that it's a very slow process and it's not likely that we'll be out of here before Christmas. And since kids aren't allowed to visit the ICU it's pretty much guaranteed that the family won't be together this year. So this is def one of those years we're left pondering the "real meaning of Christmas." Which in and of itself is a good thing. It seems like its a lot easier to shift our focus from the commercialization of the holiday to what's really most important.

I want to say that we're a strong family and will get through this just like anything else, but it's really tough right now. We are strong, and don't fish for sympathy. We want to be that family that inspires other people to be better, stronger, and not take anything for granted. But to be honest, we can't always just be strong. We have our faith, and with so many of your prayers we know we'll get through this (thank you). But our state-of-mind isn't the greatest right now. It's one thing to go through all this as a family like we have so many times in the past. But right now we're split up, physically. Ryan+parent at home and Alex+other parent at the hospital. We've been juggling it, with help from Cat and Kathleen, but it's taking its toll. And it's likely going to get worse as Alex is less medicated. I don't know what the solution is, but I pray it gets better.

Holding steady

2011-12-18T21:17:00.002-07:00

Alex had a really good day and is more alert and opening her eyes. She is still sedated but on a different sedative now that allows her to be more responsive while remaining comfortable and calm. It's so good to see her beautiful eyes again and every once in a while she gives us a wink which melts our heart. She's been watching football with daddy and we've been able to read her books and even put on Elmo's World. We are thankful for her progress and steady state. She wasn't ready for any settings to be turned down on the vent today but she is breathing more on her own which is one step closer to losing the tube.

Ryan is still not feeling well and having a rough time so we are hoping she will get some much needed rest tonight. We are thinking she may have RSV because she has all the cold-like symptoms, it's a common virus easily spread by siblings and most kids get it by age 2.

Ryan has her own little way of letting us know she misses Alex and we hope to have them playing together soon again. The hospital just went on respiratory season visitation restrictions which will last until mid April and no kids under the age of 13 are allowed to visit, period. This makes things a little challenging for us and Jimmy and I pretty much only see each other in passing when we trade off the home and hospital shifts. My mom did hang out with Ryan today for awhile and Jimmy and I had a meal together for the first time in a week and hung out with Alex so that was nice (thanks mom). Anyways, we'll see what tomorrow brings. Keep the thoughts and prayers coming our way =)

resting & teething

2011-12-17T00:03:00.000-07:00

Not much new to report today since the plan is to hold tight on weaning off the vent until the secretions thin out and she is able to start breathing on her own a bit. RSV causes thick copious secretions which tend to be sticky and hard to clear - hence why a lot of kids who are either already compromised or have an underlying lung disease have such a hard time managing this virus on their own.

As for me and Jimmy, we are holding up and have to divide and concur. I seem to be the only one in the family not sick. I've been staying at the hospital with Alex and Jimmy has been at home (aka the sick house) with Ryan. She's also teething and I know this because I got a phone call at 2:00am from Jimmy wondering where the orajel was. Of course it was here at the hospital in the diaper bag so a fun trip to Walmart was made in the middle of the night. The best part of the trip was that the only check out lane had two Russian women price matching fruit and veggies, needing gift receipts, etc which took them over 15 minutes to check out. One of the women turned to Jimmy, noticed Ryan and commented that he had a sick baby. He explained she was teething and the woman warned him to watch out if she runs a fever because that could mean she has an infection and needs to see a doctor. Too funny.

The waiting game

2011-12-15T12:03:00.000-07:00

Alex is stable and moving in the right direction. Her vent settings are improving and they are keeping her comfortable for the most part. She was pretty "snowed" last night and her blood pressures low so they backed off a bit on her pain med which made her more active and feisty earlier this morning. She has a ton of secretions and she is coughing a lot so gets really agitated when they suction and mess with her. Although hard to see as a parent it's a good sign to be active, moving around and breathing more and more on her own. She will need to be weaned from the pain meds and sedation eventually to be extubated but until then it's a juggling act to manage her pain. When she is agitated I'm reminded that she is also getting an amnesia med so she won't remember any of this. This does make me feel better (in a weird way).

We are still in a bit of shock that Alex's condition escalated to this level. We knew she was getting sick and figured she'd be a direct admit from her PCP visit. Instead we were transferred to the emergency department for the day and then finally to the floor Monday evening. Her condition went downhill shortly after we settled in and within a couple of hours they were calling a RRT (rapid response team) to evaluate her deteriorating condition. Everything happened so fast from that point on and she was rushed to the PICU. Despite their best efforts to stabilize her with less invasive measures she ended up needing to be intubated. It wasn't until early afternoon yesterday that things settled down and her labs were looking much better.

We are finally getting some of the tests and cultures back and miss Alex tested positive for RSV. Unfortunately this is not foreign to us and Alex kicked off respiratory season in the PICU a couple years ago with RSV. Because it's viral we basically have to wait for it to run its course. The ventilator is allowing Alex's little body to rest and heal as it does most of the breathing work for her. She is looking as good as could be expected so we are happy with that. We pray that God continues to have His healing hand on her and that she makes a speedy recovery.

Sometimes it's hard to find the right words

2011-12-14T23:00:00.000-07:00

Dana, a friend of ours said it best when she said "nothing is right in a momma's world if something is wrong with their baby." Well this is so true and I'd being lying if I said that I wasn't sick with worry or that I'm not scared. I also have faith and I know we have so much love surrounding us, not to mention one strong little lady that never gives up.

It's very quiet here tonight and I've been thinking a lot about our journey with Alex and how she's changed our lives. I think about all of the beautiful people we've met along the way and continue to meet as she gets older. I was brought to tears reading the comments from Wendy and Stacey who get Alex home each day safely from school and the Elmo balloon that Ashley brought Alex because she thought of how happy she would be to see Elmo when she wakes up. All of my amazing SB mom friends who can relate and know so well the stresses of being a frequent flyer at the hospital. I love that I met my dear friend Amber from Billings, MT in a waiting room last time Alex was in the PICU who is still sending her love years later. Over the years I've met the most amazing nurses that have cared for Alex and as most know I've decided to pursue my own career in nursing. Whether Alex is in the hospital or we are out having fun, my nursing school friends always show their support and I know each of them are on their way to becoming amazing nurses. There really is so much beauty surrounding Alex and our family and we are so thankful for that. It's what keeps us strong and helps us through these rough patches.

We really appreciate all of the prayers and support pouring in from family and friends. Know that we read your comments over and over again throughout the day and they mean a lot to us. Some people say they don't leave comments because they don't know what to say or they feel intimated by the other comments but anything you post is great and it's nice to know who's thinking of us and following our blog.

-Much love from the Diffees-

An unexpected visit to the ICU

2011-12-14T16:06:00.000-07:00

It's with a heavy heart that I share Alex is in the pediatric ICU at Children's. The typical upper respiratory infection that she is so vulnerable to this time of year attacked quick and hard this time and she needs a lot of support and help to fight it off. She is currently sedated and on a ventilator to help with adequate oxygenation and ventilation. She is stabilized and has a team of amazing doctors and nurses caring for her around the clock.

Everything has happened so fast and Jimmy and I are still taking it all in. In this difficult time we ask for your prayers and pray that Alex will be lifted up to God for healing and strength.

As Cat reminded me last night she is a fighter and our little princess warrior will overcome this illness. In spite of the worst case scenarios always being presented as possibilities, we have faith that God will comfort our little angel and carry her through this.

Bowling Tournament & Fundraiser

2011-12-03T15:52:00.001-07:00

Thank you to all who supported Alex and our family during our bowling tournamentand fundraiser. We really appreciate the contributions which helped us raise funds for special equipment. We've used some of the moneyto purchase a custom-made "Zip-Zac Chair" for Alex and she loves it.It's basically a wheelchair that's lower to the ground which makes it easierfor her to get around and play with toys on the floor. We plan to use our fund for adaptive equipment that will give heraccess to other fun activities like cycling and skiing.

Please don't feel bad or"sorry" for Alex and her condition. Our goal isn't to raise sympathyfor her - it's the opposite actually. We're doing everything we can tohelp her live a life free of sorrow and excuses, and teaching her to overcomeevery obstacle and challenge life throws at her. Sometimes it just takes alittle creativity and resourcefulness.

Getting ready for Thanksgiving

2011-11-23T17:55:00.001-07:00

Doing O-K

2011-11-23T17:55:00.000-07:00

Best Friends

2011-11-06T21:29:00.000-07:00

Ryan couldn't be more excited that her big sister is back home. Alex continues to get better and the wheezing has finally disappeared. We are settling back into a routine which will include Alex returning to school this week. We are keeping our fingers crossed that she doesn't pick up another illness anytime soon.

Homeward bound

2011-11-02T20:24:00.002-06:00

(actually last night)

Alex is doing much better and close to being back to her baseline oxygen requirement. We are very happy to be back home and sleeping in our own beds. Thanks for all the prayers and comments.

Much love from the Diffees

Happy Halloween

2011-11-01T00:13:00.000-06:00

rolling in the right direction

2011-10-30T23:54:00.000-06:00

Alex was all about getting out of bed and riding in her wheelchair and her new zipzac chair. (A special shout out and thank you to all who came to the bowling fundraiser and those who donated to Alex's equipment fund to make this possible). Her new chair was delivered a few days ago and we just couldn't wait for her to try it out so we brought it to her.

Alex did well overnight Saturday and had a great day today. She is sounding better and finally moving in the right direction. Please continue to pray for her healing and safe return home.

Weekend update

2011-10-29T10:15:00.003-06:00

It's a ghost town around here on the weekends compared to the hustle and bustle of the busy weekdays and looks like we'll be spending the weekend here. Alex continues to take steps back and the docs are a bit baffled with how to treat her illness. They know she has a viral component and she's being treated for pneumonia although it's inconclusive if that's contributing to this mess at all, but she's at high risk regardless.

"It's complicated" they tell us. Her treatments includes everything from oral steroids to chest physiotherapy (to help mobilize her secretions) to bronchodilators to suctioning to EzPAP treatments (positive pressure lung expansion therapy to help open her airways). We've been staying busy and Alex has been tolerating all her treatments. She's been happy and moving all around the room in her wheelchair.

Our medical team has been amazing and we are staying on the floor I work on so we are thankful for that. We know Alex is in good hands and we pray that she starts to get better this weekend so she can go home soon. Off to bed since we have such early mornings here.

one step forward, two steps back

2011-10-27T22:49:00.005-06:00

Ryan misses her big sister

This virus is still taking Alex down and our hopes of discharge today quickly faded this morning when she woke up sounding like a washing machine. She is still having a hard time managing her secretions and airway so until she can show the docs she is making some improvements she is stuck here.

The highlight of the day was during rounding when about ten doctors crowded in around her bed and she said, " I want it please, I want it please." When I asked what she wanted and she had the attention of everyone in the room she said, "hold the iPad." The Attending had an iPad she was using and everyone thought that was so funny she knew what it was. Who says a three year old can't advertise for Apple?

Color-ado

2011-10-27T11:26:00.002-06:00

The view out of our window is one bright side of being here

Nice to meet you

2011-10-26T23:40:00.004-06:00

Miss Alex was in good spirits today and making lots of friends. All of the nurses and staff have fallen in love with her. She has been the sweetest little patient (I know...I'm bias) and is doing well for being confined to her room for 3 days. Anytime kiddos have a viral infection they are put on precautions while in the hospital and are not allowed to leave the room. This definitely doesn't stop her from rolling right up to the doorway and talking to everyone who walks by.

We did see some improvement today and if she continues to do well tonight we may get to go home tomorrow. Ryan is not sure what is going on and has been out of sorts without her sister at home. This is the first time Alex has been in the hospital since she was born so it's an adjustment for all of us. Jimmy and I are taking turns staying at the hospital and going home with Ryan to sleep. We are looking forward to all being under the same roof again soon.

and she's back

2011-10-25T16:51:00.003-06:00

After taking a two year break from the inpatient medical unit, Alex finally made a triumphant return. What started out as an annoying cold turned into a visit to the emergency room, 3 visits to her primary care doc and finally her own big girl bed at Children's. We are on day 16 of this illness and we are patiently waiting for her to turn the corner.

We're raising money for equipment for Alex

2011-09-28T11:19:00.003-06:00

We've raised money in the past for the Spina Bifida Association of CO, and many of you have donated to this (...thank you). This tournament, however, is a fundraiser directly benefiting Alex and the equipment challenges she's facing (and will continue to face as she grows). Some examples include devices like a specialized "kid-cart" to aid in mobility, modified chairs for seating and travel, hand-powered tricycle for playing, etc.

This tournament is a fun way to raise money, although you certainly don't have to bowl to contribute. We'll also accept donations. If anyone wants to contribute w/o bowling we've set up a secure account through Venmo.

The simplest way to donate is through texting.

Just text: "Pay Diffee $X for Alex" to 646-863-9557 (where X=amount) - then you'll get a confirmation & secure phone call where you can enter debit or credit card info. It's pretty cool (and safe). Or you can go to our Venmo donation page here.

Time:
Sunday, October 16 · 1:00pm - 5:00pm

Location:
Brunswick Zone - Westminster, CO
9150 Harlan St
Westminster, CO

There will be tons of prizes and drawings, as well as a colorama. If you'd like to bowl, you can RSVP on our facebook event page here and just pay at the event. IF you'd like to register a team of 4 just call Sonia at 303-702-1973 and she'll take care of it for you.

Hope to see you there.

Camping in Colorful Colorado

2011-09-13T14:43:00.001-06:00

The girls absolutely love being outdoors and we love hanging out in our beautiful backyard. We hiked up Mt Yale (a 14er) and made it 3 miles with the girls. We'll have to summit another day =)

Clownin' around

2011-07-22T22:26:00.000-06:00

Alex has a party

2011-07-16T15:00:00.000-06:00

She turns 3 in a few days

Picture time with my best friend

2011-06-11T12:14:00.000-06:00

Sharing, sortof

2011-06-07T15:07:00.002-06:00

Ok...so this is kinda long and maybe a little boring. But for those of you who haven't seen the dynamic between Alex and her little sister - this is pretty much how playtime goes.

Random beautiful picture

2011-06-05T18:23:00.000-06:00

JibJab

2011-04-29T23:21:00.003-06:00

Alex's self-made documentary about-...well...something very important.

Kangaroo

2011-04-07T10:22:00.002-06:00

I think this video of Ryan needs no explanation. She would do this for hours if we let her (and we do).

Alex has wheels

2011-03-28T12:08:00.003-06:00

Alex and Ryan are doing great (aside from the frequent UTIs for Alex) - and Nic & I are hangin' in there. It's a pretty tough time for us right now with Nic in nursing school. The accelerated program is kicking her butt - but she's doing well, and I'm spending a lot of time playing Mr. Mom.

A really exciting thing that has happened recently is Alex's new set of wheels. Our friends the Gaschlers were kind enough to give us their daughter Mackenzie's outgrown wheelchair - which fits Alex perfectly. She's still getting the hang of it, but she really likes it and is making some actual progress toward mobility for the first time. This video is from her 2nd time in the chair, so she's actually a little better at it now.

It's mostly about craziness

2011-03-27T13:49:00.005-06:00

So we've been remiss in posting (again) but rest assured we haven't forgotten about our blog. So what's new with the Diffee's you might ask...we'll a lot actually. Things have been a little nuts with us since I started working again, then school started and then factor in all the day to day stuff and we are lucky if we have time to shower or have clean clothes to wear. Ok, I have been able to keep up on laundry, however, the clean clothes never seem to make it past the laundry room into our closets so it gets tricky. We've had some minor babysitting issues: our sitter gave us her notice so we are in the midst of searching for someone to care for the girls again.

On a happy note, I have survived the first 8 weeks of nursing school. Did I mention it's an accelerated program? I didn't know it was possible to cram so much stuff in your brain in such a short amount of time but I'm doing it and just hope that I retain it all by the time I'm finished. I also survived and passed my final clinical exam that consisted of a head to toe basic exam along with a randomly picked focused exam. Basically we are in a lab setting which is set up like a hospital room and we have to assess and examine our patient (a fellow nursing student) while someone is watching our every move with a clip board in hand. It's pretty nerve-racking but we have to pass it before we can be set free as student nurses in clinical rotations coming up soon.

Spring break was this week and I did manage to squeeze in a weekend trip to Chicago with some girlfriends (in honor one of my best friends who's getting married soon!) which was amazing. I feel like I'm crazy most of the time so it was nice to feel "normal" for a few days =)

Jimmy is super dad and for those you who know him, it's no surprise. I can walk in the door at 8:00pm and Jimmy is cooking dinner, holding sissy in one arm, feeding Alex with the other and will ask if I want a glass of wine. Of course he is calm and collected and I guess that's just his nature. On that note, I'm going to get back to studying. Jimmy will post a video of Alex in her wheelchair and give an update on the girls later today =)

Alex gets her first hair cut

2011-02-06T17:44:00.011-07:00

It only took us 2 1/2 years to cut Alex's hair...now she's rockin a cute short bob =)

The girls

2011-01-16T14:37:00.001-07:00

Just a quick pic I thought I'd post since they're looking so cute (and
growing so fast).

Better late than never

2010-12-09T10:51:00.005-07:00

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...

2010-12-05T14:13:00.002-07:00

More pics of sissy

2010-12-03T10:56:00.002-07:00

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

Fall Festival

2010-11-16T21:36:00.004-07:00

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

2010-10-26T14:27:00.005-06:00

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

2010-10-23T15:57:00.007-06:00

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

2010-10-22T17:33:00.006-06:00

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

through medicaid over 6 months ago)

The power of prayer

2010-10-19T23:02:00.001-06:00

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

2010-10-11T21:46:00.025-06:00

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

2010-09-17T19:02:00.000-06:00

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

Happy day :)

Folks Festival and a busy 2 months

2010-09-15T12:42:00.019-06:00

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

2010-07-15T11:16:00.023-06:00

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 :)

2010-06-22T21:48:00.009-06:00

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"

2010-05-21T11:02:00.003-06:00

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

2010-04-19T17:52:00.006-06:00

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.

Happy St. Patricks Day

2010-03-17T09:11:00.000-06:00

Bathtime pics

2010-03-11T21:12:00.004-07:00

Since we didn't post any photos - I thought I'd give a little follow up with some cute bathtime pics.

Alex really loves taking a bath. She especially likes picking up her cup full of water (with holes in the bottom) and letting it drain everywhere, even if it's in her face. As you can see from the 1st pic, she's still in one of the basic infant tubs, which we're hoping to upgrade tomorrow. We really need something that supports her upright, since she has such a hard time sitting up on her own.

In fact, that was the focus of SB clinic the other day - supportive equipment and what's available that would most benefit her. She really needs something that will support her lower back & allow her to focus on controlling her head & neck. It's just too much for her to do all 3 at once (for more than a few seconds anyway). But we're hoping the HGH therapy, combined with regular physical therapy, will get her trunk control back to where it should be. So far, the HGH therapy seems to be going well, but they tell us it will be a few months before we really start to see significant changes. She does seem to have grown another inch in the past few weeks, which is def a good sign.

Her fevers are still coming & going, but just low enough grade to keep us from taking her to the hospital (around 100F). And still pretty sporadic. But they don't seem to be going away completely, so we're going to wait until the weekend's over & see if we need to make a call to her doc on Monday. Since everything else seems fine - we're trying not to be too concerned about it, but there's always that chance that something unknown's lurking around the corner.

Spring Fever

2010-03-04T17:26:00.004-07:00

I'm sitting here in disbelief that it's been a month since our last post. Where does time go? We've certainly been busy and hit some speed bumps but we are still hospital free. Alex recently finished a two week dose of antibiotics for aspiration pneumonia. We had been to see the pediatrician a couple of times over a 3 week period for unexplained fever and fatigue and finally pinned down the problem. She's doing much better but the fevers are back as of this weekend. Unexplained fever always seems to put us on edge. It can mean so many things and the spectrum is anything from a typical virus running it's course to an infection requiring a hospital stay and anything in between. We are never sure what to expect and just try to remain positive.

We had a speech consult last week and the therapist recommended that Alex have speech therapy about twice a month. Not too sure how we'll fit 2 extra sessions a month into our schedule but somehow they'll get squeezed in. This will make 11 in-home therapy sessions a month for us. Now you know why we are only posting once a month :)

We have spina bifida clinic tomorrow and since Alex is a little older she now goes to clinic every 6 months. We always look forward to clinic and it really helps shape what the next 6 months will look like for us.

Love,
The Diffees

Our little Bansai

2010-02-09T23:19:00.004-07:00

I know it's been a while since our last post, and not a whole lot has changed since then. We've had my Mom staying with us, which has been a huge blessing. She's really been helping us out a lot over the past month - either watching Alex for us or helping out around the house - it's definitely nice to have her with us. And of course Alex loves having her here (instead of just seeing her on the webcam).

I'd love to say that Alex is just "growing like a weed" but that's not really the case, as she hasn't been growing at all for the past 7 months. And her weight hasn't changed since she was 9 months old. We had some blood work done & consulted with Endocrinology and it turns out she has a growth hormone deficiency. So we've added hGH to her battery of daily meds, which we're hoping will help significantly with her muscle tone as well as physical development.

This may sound like another setback, but to us it actually feels like a big step forward in getting to the root of some of her problems. If the hormone deficiency is causing her weak muscle tone, then that could explain her difficulty with head & trunk control as well as swallowing and aspirating (and the myriad of respiratory problems). And the hGH treatment can be a wonder drug with very little side effects in cases where the body really needs it. So let's hope & pray that this really is a big step forward. I guess it takes several months for noticeable growth improvement, but we're hoping to see increases in her energy level sooner than that. Either way, we'll be sure to keep you updated.

Much love,
-Jimmy & Nicole (& Carol)

Check out my new teeth

2010-01-21T22:44:00.005-07:00

I took this photo today during Alex's double therapy session. She has physical therapy once a week and then once a month we have a home visit from a teacher of the visually impaired. She comes to help us learn the best ways to enhance Alex's sensory experiences and learning.

I think we've mentioned this before, but just to give a little history, Alex's vision is fine however she does have some issues with eye function most likely caused by her Spina Bifida. Early last year her PT noticed she was having difficulty looking to her right side along with some other issues so she had a vision test and functional vision evaluation done. She was diagnosed with two functional issues and the doctor recommended we take her twice a week to an infant and toddler class offered through Anchor Center for Blind Children. It's a non-profit organization dedicated to providing early intervention and education to blind and visually impaired children throughout Colorado. The center is amazing. It was built in 2007 and it's about 2 minutes from our house. When I took her there for her initial visit last summer they had us wait in a dark room filled with lights, textures, and sounds. As good as this option sounded to us (and Alex too who I'm sure would like to be around kids her age) we couldn't risk Alex being exposed to so many germs. We've settled for home visits for now and maybe this summer she can attend class.

Did you check out those two front teeth. Alex got those for Christmas :)

Welcome to Holland

2010-01-09T15:32:00.005-07:00

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

--

I've read Welcome to Holland before but Aunt Genell recently emailed it to us and I thought it would be appropriate to share as we start a new year. This past year has been a big one for us and felt like a roller coaster ride. So many ups and downs and so much we didn't anticipate (like 9 ER visits, 7 inpatient hospital stays and over 50 outpatient visits). We knew that having a child with special needs would be different and would take adjustment. We also knew we'd have good days and bad days. Despite spending so much time at Children's, if you've followed our blog you can tell we've had far more good days than bad, and the bad days just make us appreciate the good ones even more.

It's true what Emily says about learning a whole new language and meeting new people. We've definitely had a medical crash course the past year and we continue to learn the language of insurance and medicine. We've met some very amazing people. Alex has had extra special care from Miss Leah and Miss Amanda and so much support and prayer from The Holmes family hundreds of miles away. There are so many people that have helped us along this journey we couldn't possibly name them all here. But there are a special few (outside of family and close friends) that have inspired and touched us in a special way: Trevor, Amber/Alli, Lacy/Autumn, Jenene, The Day family, and everyone from SFC. Thank you all for helping us along the way.

We look forward to a new year, growth and most of all Hope.

Christmas 2009

2009-12-27T21:47:00.017-07:00

Just waking up

Alex loves her new Elmo book

A new friend

Can you tell Alex adores her dada?

Christmas 2009

Hope everyone had a great Christmas. Jimmy and I hung out with some family on the night of Christmas Eve while Alex stayed home with her sitter. Although it would of been nice to bring her along, it's too risky to have her around a lot of people, especially kids. Our original plan was to travel to Tulsa for Christmas, but we decided to play it safe and stay home this holiday.

The three of us hung out at home by the fireplace on Christmas day. We opened gifts, watched movies and relaxed. What a change from the busy weeks leading up to this time. We had no places to be, no work or school, no appointments or therapies and no health concerns. It was truly peaceful and calm.

Last year Alex slept through the excitement at Christmas, even opening gifts. This year she decided to continue the tradition & literally fell asleep playing with tissue paper. It was so sweet and we happened we catch it on video:

After her nap.....

Winter Update

2009-12-22T22:44:00.004-07:00

Just wanted to post a few pics and let everyone know we're doing ok. As with most people during the holiday season, we're super busy. Not so much with shopping and holiday parties but more with work, doctor appointments, therapies and keeping up with things at home. Alex is getting over another UTI and having tests done since she has completely fallen off the growth chart. Don't know too much at this point other than she will be seen at Children's in January for further testing. She's also gotten the flu shot, H1N1 and synagis shot for RSV. Actually the synagis is a once a month shot at a special clinic so she has another one scheduled for tomorrow. I think we've built up our defenses the best we can so we'll continue the lock down and pray she stays healthy. Say a prayer for us because the lock down situation is very challenging at times and can make us feel isolated. We know it's temporary so we try to focus on that and really look forward to warm weather.

Alex has a few teeth coming in and loves to chew on her oxygen tubing so thought we'd post a few pics. Wishing everyone a Merry Christmas and may the new year bring us all Hope.

Love,
The Diffees

A lot of thanks to give

2009-11-26T21:15:00.007-07:00

We couldn't be more grateful to have Alex home for her 1st appreciable Thanksgiving. Especially considering how much the child loves food (not unlike her parents). We've had a great day cooking & hanging out with our family from Tulsa (via video chat).

Nothing like a kitchen filled with the scents of Thanksgiving

Alex, on vchat with her Tulsa Grandparents

2 great-lookin' turkeys

Clockwise fm bottom left: mashed pots, giblet gravy, yams, dressing, and green bean casserole (center)

Gobble, gobble

So we fed Alex her normal lunch, plus a bottle, then sat down to an early t-giving dinner. Even though she had just eaten (a lot), she kept whining & making puppy-dog eyes until we fed her from our plates. Welcome to the gluttonous American holiday we all have come to know & love so dearly.

In fact, I think I may go for round 2 right now :)

Happy Thanksgiving!

New equipment to help Alex stand

2009-11-14T15:52:00.005-07:00

It's been a busy two weeks since we last posted. I came down with a cold right after Halloween that stuck around for a while, and of course Alex came down with it too. We are both doing much better now and Alex managed to fight the bug off all by herself! This is a first, and definitely a good sign. When dealing with SB and her other chronic health care issues, we are often told, "let's just wait and see what happens." It's been a waiting game since we were first told about Alex's SB so I guess we've learned to accept this way of life and patiently wait for answers. It seems like we are constantly trying new meds or adjusting doses and still working on the right drug cocktail.

As you can see from the pics, Alex got a stander. From her chest down, her body is supported allowing for weight bearing on her lower extremities and feet while in a standing position. She's in the stander for about 20 minutes twice a day and doing well. She works so hard holding her head up and playing with her toys simultaneously and fatigues pretty easily. We will slowly work her up to being in the stander twice a day for an hour.

The stander is actually really nice and we got it from a local non-profit founded by a couple who has a child with disabilities. As their child grew out of her first wheelchair they realized that there wasn't an organization out there that existed to help find a new home for such equipment so they created one. They basically rehab equipment that has been donated and usually outgrown by the owner and then sell it for a fraction of the price to families like ours. Our stander would normally cost about $2500 and is not covered by insurance, yet we got it for $200. Medicaid usually kicks in and helps pay for DME (durable medical equipment) but we unfortunately are on a 3-5 year waiting list to get on it. I'm not going to get on a soap box about health care, but we are happy to have a great resource in town that will help Alex be more independent.

We hope all is well with everyone and send our love.

Happy Halloween

2009-11-01T23:24:00.002-07:00

Our little lady bug had a great Halloween this year. Nothing over the top and no candy but she did enjoy getting out of the house for awhile last night. She tagged along in her stroller as her older cousins went house to house trick or treating.

A Winter Adventure

2009-10-31T11:34:00.004-06:00

Want to go outside and play in the snow?

"I don't know, it's pretty cold"

"Look, I can eat snowflakes. This isn't so bad."

"But I think I'd rather veg out on the couch."

We had our first snow storm of the season this week and got almost 2 feet of snow.

Fall photos

2009-10-25T18:32:00.004-06:00

Thought we'd share some of the fall photos we've taken recently. As you can see, things are going pretty well. Alex just finished her antibiotics for her UTI and is recovering nicely. We've become quite obsessive about germs and go through a lot of anti-bacterial soap and hand gel. Although Alex loves those Target runs with mama, I think she equally loves to stay home and watch football with dada. Anyone who comes over to the house knows that the first thing we ask is "did you wash your hands," and then of course we say hello and give hugs :)

We know this is just the beginning of respiratory season so keep us in your prayers. We send our love to everyone.

Love,
The Diffees

Been working out

2009-10-18T21:10:00.002-06:00

gun show anybody?

Funny girl

2009-10-16T22:04:00.002-06:00

So we're officially on lockdown for the winter - so far, so good. Alex has another UTI, but we'll take that over a hospital visit any day. Lately Alex has taken to entertaining herself by screaming, then thinking it's funny & cracking up. We caught her on video & just had to share:

October is Spina Bifida Awareness Month

2009-10-06T18:57:00.009-06:00

So we've decided to post an informative bit about SB, as a refresher for those who may not know or remember the details:

What is Spina Bifida?
Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. The term spina bifida comes from Latin and literally means "split" or "open" spine.

Spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo's spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. The condition usually is detected before a baby is born and treated right away.

Why does Spina Bifida occur?
The causes of spina bifida are unknown. Some evidence suggests that genes may play a role, but in most cases there is no familial connection. Some researchers have discovered that folic acid, a common B vitamin, can help reduce the risk of having a child with a neural tube defect. Women who take folic acid daily for at least one month before pregnancy will reduce their chances of having a baby with spina bifida by up to 70%. The FDA recommends that ALL women of child-bearing age take 0.4mg of folic acid everyday. You can find this amount in most mulit-vitamins.

What effects does Spina Bifida have on a baby?
There are two forms of SB. Spina bifida occulta is the mildest form of spina bifida (occulta means hidden). Most children with this type of defect never have any health problems, and the spinal cord is often unaffected.

Myelomeningocele (the form Alex has) is the most severe form of spina bifida. It occurs when the meninges push through the hole in the back, and the spinal cord also pushes though. Most babies who are born with this type of spina bifida also have hydrocephalus, an accumulation of fluid in and around the brain. Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

Children with spina bifida often have problems with bowel and bladder control, and some may have attention deficit hyperactivity disorder (ADHD) or other learning difficulties, such as hand-eye coordination problems.

As most of you (who have followed us on this rocky path) know, there can be a myriad of other problems associated with SB. It's a daily struggle and prayer to get us through them. But ultimately it's awareness of SB, and the role folic acid plays, that can help to reduce the number children born with it in the future. So we ask that you take the time to share some of this knowledge with anyone who may be curious about Spina Bifida and/or the importance of folic acid.

Physical Progress

2009-10-02T20:13:00.002-06:00

I decided to post some pics I took from Alex's physical therapy session this week. Mary, our PT always laughs at how many pictures I take but what can I say, we are proud parents. Alex has been making big strides lately with her physical development and motor skills. She's holding her head up for longer periods of time and bearing weight on her arms. She is pressing buttons on her toys, reaching for things and starting to use her index finger and thumb to put dry cereal in her mouth. It's exciting to see the progress she is making and inspiring to see her strength and growth the past few months.

Who could say no to these eyes?

2009-09-29T01:34:00.001-06:00

We're in trouble...

Fall flower

2009-09-29T01:30:00.001-06:00

Here's a nice pic from our evening walk. She's getting pretty good at
holding things, although they all and up in her mouth.

Big-girl spoon

2009-09-21T21:36:00.004-06:00

The last couple of weeks have been full of trying new things. We've had some minor setbacks with eating solids recently but between new spoons and thickening, we seem to be back on track. We are still working on lots of tummy time which will ultimately help strengthen Alex's trunk and neck muscles and in turn help her gain more control when eating and hopefully stop aspirating (at least we hope this is the case). Alex is finally showing some interest in holding her own spoon and feeding herself. Her OT suggested we start putting food on her tray and let her play with it but she's much more intrigued by feeding herself with a spoon so that's what we've been working on. I have to admit that giving Alex control of a spoonful of food is hard and I have to just get over her getting messy, especially when the veggies go straight into the hair.

The weather has been amazing lately and we've been spending as much time as we can outside. We squeezed in one last camping trip with the fam a couple of weeks ago and we are laying low and spending a lot of time at home and in our backyard away from the crowds.

Here's a video of Alex's semi-success with feeding herself.

1st round of pics from Folk Festival

2009-09-15T13:08:00.003-06:00

We've taken so many pics lately, and been doing so much this summer that it's been an overwhelming task to go through all of them & pick the best ones to post. We feel like we've really made the most of our hospital-free time this summer.

So I'm just going to start by posting a few pics from the Folks Festival we went to in Lyons last month. We had such a great time - even better than Telluride.

Sorry it's been so long. Been a busy summer.

2009-09-02T22:52:00.003-06:00

We've been enjoying our summer...trying to pack in as much as we can. We recently got back from camping at Red Feather Lakes for the weekend. Several weeks before that we took Alex to her 2nd music festival - the Folks Fest in Lyons. We actually enjoyed it quite a bit more than the Bluegrass festival, as it was a lot more family-oriented. I'll post pics soon, just don't have them handy right now.

We also had some tests recently which determined that Alex is still aspirating, although it's not certain if it's her food she's aspirating or her own secretions. Of course, the docs are bringing up the G-tube (feeding tube) as a potential solution, but we've decided that we're not going that route unless there's no other option.

She also had another MRI, but despite our calls to the Neuro docs, we still haven't heard any results. Guess we'll just have to wait for them to get around to us. No news is good news, right?

It's hard to believe summer is practically over now. We definitely have made the most of it, but we're dreading winter and another season of respiratory infections. Add to that the concerns about Swine Flu (which targets the respiratory system), and we're certainly planning on keeping Alex on lockdown.

Anyway...just wanted to catch everyone up. Sorry it's been so long. We have a ton of pics to post soon, once we can get them on here.

Until then...

Summer Fun

2009-08-03T20:17:00.010-06:00

We can't believe it's already August. It's always fun to see how much we can try to cram into 3 hot months. We did manage to take Alex swimming for the first time recently and she LOVED it! We definitely need to get a few more pool days in before it cools off.

Alex's blood work and tests she had done at Children's last week all came back normal so we think that is a good thing. Our next hunch is one of her new meds is inadvertently causing the fevers so we'll try her off of it for a few days and see what happens. Other than that, Alex is doing great and has been a happy little girl. Nana Carol is here visiting and taking really good care of her. God always knows when to send us an angel :)

Fever, Fever, go away

2009-07-29T22:18:00.002-06:00

Things have been going ok this week but have to admit we are a little on edge since Alex's fever is still sticking around. No other symptoms are present so it's really hard to tell what's going on. We'll be visiting Children's in the morning for a check up with Neuro and they will tap her shunt and attempt to do a blood workup. We could really use your prayers for Alex (and mommy and daddy too).

Happy 1st Birthday Alex

2009-07-24T08:27:00.017-06:00

Alex turned one today!

I think this officially means she's a toddler not a baby :( We celebrated Alex's birthday with some of the fam last weekend who were going to be out of town for her party and snapped a pic to post. Alex made another appearance at her doctor's office today because her fever has not gone away. After a thorough check up, the doc decided we could wait a few more days before having to do a blood workup. We are hoping it clears over the weekend - we have a lot to celebrate :)
We are having a little party today and should have some more pics to post later.

PS- remember to sign your name if you comment so we know who you are.

A little fever

2009-07-22T10:56:00.006-06:00

Things have been fine & summerish at the Diffee household lately. Except for this fever that Alex has had since Saturday night. It's not been very high - just around 100 - but it's been staying there & we're starting to get a little concerned. Our doc says 95% of fevers with no other symptoms present are due to a virus, so that's most likely the reason. But when that's the case, the fever almost always goes down within 3 days. So this is her 4th day with it - and if it doesn't go away today, we're taking her back to the doc for some bloodwork.

So if you're sitting around wondering what you could be praying for this week - we have just the thing. Let's hope this fever is harmless & goes away asap.

Spina Bifida Clinic

2009-07-14T23:23:00.013-06:00

During their first year, SB kids in the area typically have Spina Bifida Clinic every three months. On Tuesday we spent the majority of the day at our SB clinic meeting with different teams of specialists and doctors. The highlight of the morning was definitely our little butterfly showing off one of her new moves ("the tripod" - see pic 1) while smiling her toothless grin.

Alex had a kidney ultrasound done during clinic and it did show some reflux which I'll try to explain, but bear with me since I'm no urologist. Basically normal urine function consists of the kidneys creating urine, it flows through tubes called ureters and enters the bladder which acts like a holding tank until the muscles contract and the sphincter relaxes and urine flows out of the body. Reflux happens when the muscles & sphincter don't work together exactly as they should and urine flows back through the ureters into the kidneys. This is bad because bacteria can cause infections and repeated infections can cause scarring and/or disease of the kidneys. Good news is that after we cathed her the problem resolved so we should be able to avoid infection by continuing to cath her. I know cathing freaks a lot of parents out but it's really not that bad and it just becomes routine. We were those parents reading about SB before Alex was born and cathing seemed like such a big deal and something we dreaded for our baby. Although we hope that Alex will someday not need to be cathed, it often just comes with the territory and is almost to be expected with SB kids.

We met with a physical therapist and talked at length about Alex's physical development since she's so behind. She attributes this mostly to her being in the hospital so much and her low muscle tone. It's kind of a vicious cycle - Alex gets sick or has a surgery, meaning no PT or movement for days or weeks, comes home & starts to get back into a PT routine, then she gets sick again. 1 step forward, 2 steps back.

It's crazy - we never anticipated Alex being on oxygen for this long. In fact we thought it would only be for a few weeks, and we certainly didn't expect her chronic respiratory issues and so many hospitalizations. Soon after she was born our focus was really her basic physical development and mostly if she would ever walk. Now things are much more complicated, as you well know, and we're just taking things one day at a time. We're praying that her respiratory condition improves so we can get back to focusing on her milestones and physical abilities. The PT during SB clinic always gives us good ideas to try at home and different exercises to do. We also work with a great in-home physical therapist once a week who we just love and connects so well with Alex.

I have to share about "Aunt Janie" (in the 3rd pic) who is actually a Neurosurgery Nurse Practitioner that we see in clinic. Janie makes things happen for us. She was the driving force behind Alex having her decompression surgery and she's a big advocate for us. She takes time out of her schedule to visit us when Alex is in-patient and she's introduced us to other families raising SB kids. She loves what she does and it's always good to have a "Janie" on your team.

Overall, we've been doing pretty well the past few weeks and staying busy as always. We did have one scare this week and we were half way to Children's before deciding to turn around and go back home. We couldn't determine if Alex was having a shunt malfunction or just had really bad gas. I know this sounds bad but even the slightest change in eating or sleeping can make you worry about shunt problems - so much so that an average crying fit has us packing a hospital bag. Fortunately, it was a false alarm (gas, we think) so we just came back home & made dinner.

Anyway, we've been staying at home as much as possible, which is hard because we love summer time bbq's and social gatherings, but it's for the best. The last thing we need is for her to catch another bug, sending us back to the hospital

Sorry for the novel, but there's just been a lot going on that we felt like sharing. We send our love to everyone and keep praying that Alex stays hospital free :)

A happy 4th

2009-07-06T11:50:00.004-06:00

We had fun celebrating Independence Day at home with Lauren, Scott and Archer. We consider them some of our closest friends and we always have good times together. We had a bbq, hung out in our backyard, fired up the chiminea and ate some good ol' fashioned apple pie for dessert. Not a bad 4th. We spent the rest of the weekend relaxing and working on some projects around the house. Wish we had more weekends like this!

We're home

2009-07-04T11:34:00.004-06:00

Alex is still pretty congested and not feeling well but we can still
manage to get a few smiles out of her. We have no plans for the fourth and will probably have a low key weekend. We are OK with that :)

Missed flight

2009-07-02T20:57:00.005-06:00

We've been looking forward to the holiday weekend and hope we won't be watching fireworks from the 8th floor of Children's. We'd been planning to go to Tulsa for a wedding but don't think we're going to make our flight tomorrow morning. Ok, we are def not going to make our flight tomorrow but it doesn't hurt to pretend we might, right?

Alex doesn't seem to be getting any better yet but should be turning the corner any day now (heard that one before?). The steroid she is on (Prednisone) is making her really fussy and irritable - not fun for anyone. We've been asking a lot of questions and working with the docs to get to the root of her chronic respiratory issues. It's going to take time and require more tests on her immune system, a scope of her throat and a CT scan of her lungs. Most of this will need to be outpatient and done when she is not so sick. They've also ordered an MRI to follow up on her recent sleep study. A lot to follow up with and hopefully some answers.

This probably goes without saying but we are tired. These hospital stays really do take a toll on us. We know God has good things in store for Alex and our family and we count our blessings every day and try to stay focused on the positive. It definitely helps to have so many supporting us & praying for us.

Our baby is back in the hospital

2009-06-30T15:16:00.006-06:00

Alex was having some respiratory issues last night and struggling to breathe so we made a trip to Children's ER and she was admitted. Jimmy and I have have resorted to taking shifts and he had the long dreaded night (or should I say morning) shift in the ER with Alex while I stayed home to get some sleep.

We don't know what to expect for this stay yet but should know more tonight or tomorrow morning. They've bumped up her oxygen and will continue to monitor her breathing. One of the docs followed up with us on her recent sleep study and seems like it is worse than the first one which is so disappointing to hear. Enough bad news for the day...please pray for rest and strength for our family.

Telluride recap - and general update

2009-06-24T22:41:00.003-06:00

As you can probably tell from the pictures we just posted, things are going well. We haven't been to Children's or had a doctor's appointment in over two weeks! It's weird because I keep checking my planner thinking we are missing something but I haven't gotten a phone call telling us otherwise so I think we are doing alright.

Alex is a great little traveler and festivarian. She loved being in Telluride. We camped at an awesome campground (with a couple 1000 others) and it took us awhile to get up and moving in the mornings and pack for the day. Alex was the first person up in the entire campground each day (before 7am) but we took our time to enjoy the mornings: cooking breakfast, sharing coffee, hanging out with our neighbors, taking walks and listening to people playing music all around us. As soon as Alex would start getting restless in the camper we'd put her chair outside and she'd be good to go until we took off to the festival. We took a 15-20 minute bus ride in and out of town each day and Alex loved this too. She spent a lot of time in her carrier with mommy while in town and hung out in her tent at the festival when the sun was out or it was breezy. It took us about 8 hours to travel to Telluride and another 7 back but Alex was a trooper both ways. She slept over half the time which was nice and didn't protest being in her carseat all day.

We've been meeting once a week with both PT and OT and working on Alex's physical development, eating and motor skills. She has low muscle-tone so we focus a lot on head and trunk control and hope she'll be able to hold her head steady for longer periods of time and eventually sit up on her own. She's definitely getting stronger every day and making us so proud. During tummy time, she pushes herself up for longer and if we put her on her side she can turn over on to her back. She is also interacting with her toys and surroundings more, and one of her favorite things to do is pull out her oxygen cannula and chew on it. We try not to laugh because we don't want to encourage this type of behavior, but it's so funny sometimes watching her be sneaky about it or blow bubbles with it in her mouth.

Alex wears her pink leg braces, also known as Ankle-foot orthoses or AFOs every day to help support her ankles that are turning out. They go up to her knees and don't seem to bother her at all. We have them on about half the day right now and will work up to her wearing them all day this summer.

We are still waiting to hear back on the sleep study and have a lot of appointments at Children's coming up in the new few weeks. It's so good to hear from everyone and we can't tell you how happy we are to read the comments you leave. We send our love and a big hug for all the thoughts and prayers.

Love,
The Diffees

Our family vacation

2009-06-24T22:11:00.002-06:00

Hello from Telluride

2009-06-18T14:25:00.000-06:00

We couldn't be happier to write you all from beautiful Telluride, CO.
We're here for our 1st family vacation at the Bluegrass Festival.

All is well with Alex, and we're having a blast so far. The weather is
gorgeous and the mountains are incredible. This is truly God's
country. We're so thankful to be here.

Happy

2009-06-08T21:51:00.006-06:00

Alex has been one happy little girl lately. It's been a quick recovery from her last surgery and so far no more problems with the shunt. She's also gotten over her respiratory cold and she's sounding much clearer. She did manage to get another UTI (surprise, surprise) over the weekend so we did have to visit Children's on Sunday morning. Luckily it was a fairly fast trip and once we got her prescription we were on our way home to enjoy the rest of the day.

We took Alex to her first City Park Jazz concert yesterday which was really fun and we actually got to hang with a great group of friends. J and I really haven't gotten out much lately and it was nice to spend a relaxing evening outdoors listening to jazz, reminiscing with friends and of course sharing all of this with our baby girl. We thank God for these special times and friends we are blessed to share them with.

We're at the hospital overnight for a sleep study and will be heading home about 6:30 in the morning. I'm not a morning person so I better get some rest while I can. Maybe I can get a fancy head wrap like Alex to sleep with? Good night :)

We are home

2009-06-03T22:31:00.008-06:00

Just in time for a bedtime story from da-da-da-da

Ready to go home

2009-06-03T12:47:00.003-06:00

The sun is out today and all is well with the Diffees. Alex had a pretty good night and is doing well considering she just had surgery 12 hours ago. She is resting up so she can go home. If she manages her pain without needing the heavy stuff, she'll go home later this evening. We couldn't be happier. We know a lot of prayers are being said for our baby girl and our family and we are so grateful :)

Recovering

2009-06-03T00:48:00.001-06:00

Surgery went well and Alex is sleeping. Hopefully she'll stay down for the night. Nic and I have gone home and are going to try to get some rest ourselves.