Virus of the week

Alex is hanging in there today, fighting off this new bug. Labs came back this afternoon and turns out she tested negative for the ParaFlu which means she fully recovered from that. Bad news is she did catch another viral infection. We are not sure exactly which one she has now since it wasn't detectable but it must be whatever happens to be going around.

At one point today I suspected swine flu. She was snorting more than normal but a little suctioning cleared it up and eased my mind. Bad joke, but seriously the ER was full of kids with masks on yesterday who just had a fever or cough and parents paranoid by the media.

Now we just wait for things to improve. We pray that there is not an underlying problem or something that the docs haven't detected that is causing these infections. It's tough because they want her to fully recover from these viruses before they can do further studies but we can't seem to get her healthy long enough for this to happen. We really hope this is the last infection of the season.

On a brighter note, it was a beautiful day in Denver. We are staying on the 8th floor and we have a nice view that lets plenty of sunshine into the room. Guess it's supposed to be rainy and cloudy this weekend so maybe it won't be so bad being indoors.

We send our love to everyone :)

Déjà flu

So we've checked back into our home-away-from-home at Children's Hospital, with nearly identical symptoms as the last time. So we're betting that it's the same ParaInfluenza virus that just never fully went away. But they're processing labs now, so we should know definitively in a day or so. Meanwhile we're just making ourselves comfy. We're certainly not new to this routine.

We need a bubble

I feel like we've been on a roller coaster ride this entire winter and we are ready to get off. Seems like Alex has come down with another respiratory cold or virus. She was coughing a lot yesterday and sounding congested and she didn't have the best night. This morning she had a fever and you could hear her wheezing from across the room.

The thought of another hospital stay makes me want to invest in a bubble for her. We've been avoiding crowds since we've been home and aside from her appearance at Auntie Natalie's birthday party on Saturday and a couple of appointments at Children's, we've been hanging out at home. We even had my grandma watch Alex while we went to church on Sunday since we've missed going so much and J and I take turns going to get groceries and running errands.

It's tough to see our baby girl sick and I'm sure those of you who have children can relate. Please say a prayer for Alex and the fam tonight.

Spina Bifida Run/Walk/Roll

Alex & family are doing great. We're 1 week of hospital free, and hope to keep it going.

Many people have been asking us if there's anything they can do to help, and there happens to be an opportunity coming up to help out with Alex and her cause. The Spina Bifida Association of Colorado is holding their annual 5K walk/run/roll fundraiser on Mothers' Day (May 10) and we're participating. So we're reaching out to others to join us at the event, or by sponsoring us.

Funds raised from this event give SBAC the opportunity to provide a variety of services to children and adults in Colorado with Spina Bifida, such as:

• Scholarships for seminars, camps and recreational activities, such as: horseback riding, skiing and Jr. Wheelchair Sports Camp.
• Direct financial assistance to member families. Assistance is also offered to families to attend the National Annual Conference of the Spina Bifida Association of America (SBAA).
• Handcycles for loan to children with Spina Bifida living in Colorado. SBAC currently has 13 handcycles on loan to families.
• Equipment Loan Program. In addition to handcycles, SBAC helps families recycle their wheelchairs, walkers, crutches and other equipment their children have outgrown or no longer use.
• Publication of a quarterly newsletter as a way to keep members informed on changes in medical treatment, education, recreational opportunities and research on Spina Bifida.
• Availability of information to educators about the problem areas that children with Spina Bifida encounter in school.
• Wheelchair Awareness Program for elementary schools to use in sensitizing classmates to the difficulties an individual has when using a wheelchair.
• Speakers Bureau for community, education and parent groups interested in learning about Spina Bifida.
• Support to families of newborns and new families transferring to Colorado.

If you're interested in participating, you can register for the event and view details here. Or if you would like to sponsor us, we've set up a Paypal account to accept donations via the link below. 70% of your donation will go to SBAC, and 30% will go into an SBAC scholarship fund for Alex to provide adaptive equipment, therapies, medical supplies and durable equipment, camp, sports, etc.

We've set up a Facebook cause that accepts donations.


To donate without going through Facebook, click the button below. I think the standard donation (for the event) is $20, but you can donate as much or as little as you like.

or SUPPORT THIS CAUSE ON FACEBOOK

Love,
-The Philanthropical Diffees

Glad to be home

The Diffee family is staying busy and enjoying our time at home. We had a nice relaxing weekend (although it went by way too fast). It's always a bit crazy once we get home catching up on house work, making appointments and settling back into a routine. Just when you think you have it under control, you realize right before your 4 o'clock appointment that you are out of diapers!

Alex had a pulmonary appointment today at Children's and she has her Spina Bifida clinic in the morning. Nothing surprising with our pulmonary visit today, mainly just a follow up. They want to wait a month or two to do another sleep study in hopes that Alex will be fully recovered from the most recent virus and to make sure they get a good accurate study. She will also be seen by an ENT doc (ear, nose, throat) in about a month to check out any obstructions in the nasal passage and/or throat that could be contributing to her oxygen requirements, sleep apnea or aspiration.

Alex has been a happy girl although we haven't had the camera out to capture that the past few days. We are thankful she is out of the hospital and recovering well at home. We are so grateful to those praying for our family and send our love to you all.

Hoping tomorrow brings us some encouraging news on Alex's progress. We'll keep you posted.

We're Home!

Alex was discharged yesterday evening and we drove home on some very slushy streets. A spring storm hit us right about the time we were heading home. I posted a pic of our street. It's turned into rain today but we are still staying bundled up inside. Alex is doing much better and you can tell she is excited to be home. Mommy and Daddy are happy to be home too.

One more day

It looks like they are keeping us hostage for at least another night, but we are hoping to go home tomorrow. Her oxygen need has gone down which is great and means we are moving in the right direction.

It's been pretty uneventful around here. Sometimes it feels like groundhog day. I've been coming up to the hospital early in the mornings and working from here some and going into the office some. We've had family and friends hang out with Alex while we are away, which has worked out well. We tuck her into bed before we leave at night and go home to get tucked into our own bed around midnight. Then we get up and do it all over again.

Hopefully, tomorrow will be a different routine.

Home stretch

We are having another good day and Alex is sounding even better than yesterday. We are ready to take her home but her oxygen needs are keeping her here. It's going to take some time for her lungs to fully recover but hopefully she'll go home in the next couple of days on an O2 amount the docs feel comfortable with.

Alex is playing with daddy right now and can't decide if she's still hungry or ready for bed. My bet is the latter. Alex says good night to all her peeps.

Our warrior princess

is slowly getting better and we are hoping to go home later this week. It's hard to say exactly when we'll get discharged but things are looking up. We can tell Alex is feeling better by her big smiles and she sounds a lot better too. She's been talking to everyone who walks in the room and loving the attention. We watched Cinderella this afternoon and every time Cinderella sang, Alex thought she should sing too. She loves music and it was the cutest thing to watch her "sing along". I'm sure she already wants to be a princess like her little cousins :)

Not a bad Monday. We are just hanging out and enjoying the sunshine (as much as we can from inside). Urology ordered a kidney ultrasound today and Alex was so excited to be out of her room and walking around with mommy to and from the radiology department. She talked to the technician the whole visit and the ultrasound transducer (we can just call it a wand since Alex is a princess) tickled her big belly.

Easter

Happy Easter everyone. We've just been hanging out at our home away from home, missing out on the yummy Easter feasts. :( We're a little bummed, since we'd originally planned on having family over to our house today, and the gloomy weather doesn't really help.

But we're fine overall. Alex is still very wheezy and struggling to breath much of the time - it doesn't appear that she's getting better quite yet. But at least she's not getting worse. And she's still breathing completely on her own, with no machines - so she's staying in fairly good spirits (as are we).

A brief update

Alex is up and down on her breathing (no pun intended). Sometimes she doing really good and sometimes she's not. We are just waiting this out.

Good night, bad day

It's always good to hear that your baby did well overnight when you call in the morning to check in. Although It's hard to leave Alex, going home and getting a good nights rest really helps us all and gives us the energy we need to get through each day. Usually by the time we leave the hospital at night, one of us is already crashed on the couch or in a chair.

Alex remains stable and it's looking like she will be here for a few days. So far it's been a stressful day and Alex can't seem to get comfortable. I don't know if she just feels awful or if something else is wrong but she is nowhere near her cheery self. She been fighting her sleep for hours and she's wearing down so I'm hoping she'll be able to get some rest this afternoon.

It's nice to see all the comments today and we appreciate the prayers. Keep them both coming - we could use some encouragement.

Life in the fast lane

Alex had her first ambulance ride today to Children's. She had an appointment with her pediatrician this morning and was having difficulty breathing so they called in a bus to come get her. She continued to struggle a bit during the ride but stabilized once we settled into the ER for the afternoon. Alex has parainfluenza virus which is responsible for causing another case of bronchilitis (infection that affects the tiny airways, called the bronchioles, that lead to the lungs. As these airways become inflamed, they swell and fill with mucus, making breathing difficult).

Alex has been admitted to the pediatric floor and we are praying for a short stay this time. The docs and nurses all know her by name and have awarded her with the Triple Crown since she has officially laid claim to all three major respiratory infections this season.

At least it's not RSV...yet

We got word from the docs that Alex has another respiratory virus which is commonly associated with Croup. Not what we wanted to hear. Luckily we don't think she has croup but is just dealing with some congestion, wheezing, and a few restless nights. She did turn up positive for the UTI and we got it under control with antibiotics early on so it should be clearing up soon. Speaking of antibiotics, I left the bottle at daycare today which means Alex will miss two doses tonight. I find myself forgetting things like this more than I'd like to admit and honestly it's hard to keep up with all of this stuff sometimes. We are constantly scheduling appointments, ordering various supplies, dealing with insurance and referrals, trying to stay on top of Alex's meds and trying to be the best parents we can be. At the end of the day, I know we do our best and just seeing a smile from our baby girl or hearing her laugh makes the daily stresses melt away.

I decided to post this pic of Alex because it sums up the mood around the Diffee house and makes us smile at the same time.

A trip to Children's but back home

Much to our dismay we spent our Sunday at Children's hospital. Respiratory season is not done with Alex - bronchiolitis is back. This lung infection is caused by a virus, usually RSV and we will have to wait for a couple of days to find out if it is in fact RSV again or if it's another type of viral infection. We had a great day yesterday and really did not see this coming. She did well without the oxygen but it's short lived because we won't be able to begin weaning again until this infection clears up and her lungs get fully healed.

We could tell late last night before bed that she wasn't feeling so well. Right away we began wondering if maybe her tummy was upset or maybe she was aspirating again - she wasn't exactly eating well. It's hard for us to discearn if it's normal baby stuff that is affecting Alex or if her shunt is malfuncting or if it's something to do with the spina bifida. We decided to err on the side of caution and take her in this morning. She had a restless night and woke up with a fever and sounding congested. We also suspected another UTI. Needless to say it was a long drive to the hospital, one we didn't think we would be making so soon.

After long periods of waiting, a chest x-ray and a couple of tests, we were sent home with some antibiotics to treat the UTI. It takes 24-48 hours for the test cultures to come back and fully indicate if she has a UTI and to find out what type of viral infection Alex has but it's safe to say that she probably has a UTI and it's better to start treating it than to wait.

Suffice it to say we are all glad to be home tonight. Even when Alex is not feeling well she still manages to give us smiles and make us laugh. She's been pulling the oxygen down from her nose and trying to eat it all night. She tries to be sneaky about the whole thing which just cracks us up. We know that this is just the beginning of a sickness and we pray that over the next couple of days this does not take her down again.

Celebrating Life

Well guess Denver dodged the spring blizzard we were expecting which made for a great day to celebrate cousin Isaac's 1st birthday. It was a fun day hanging out with the fam, laughing, crying, and making sweet memories.

Love to all,
The Diffees

Doing great

As you can probably tell from our lack of posts, we're getting back to a normal routine. We're going to try her off the oxygen today and see how she does.

She's going to her cousin's 1st bday party today so there should be lots of pictures taken. We'll post some of them soon.