Fever, Fever, go away

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

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

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

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

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

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

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.

More questions, more drugs

Alex is sleeping peacefully after a long day. What we thought might just be an overnight observation has turned into more than that. We think she may be released soon, but it really just depends on her secretions (as usual). She's been pretty fussy this evening, which may be a result of a new med they've put her on for 5 days - Prednisone (an immune suppressant/anti-inflammatory drug w/quite a few side effects). Personally, I don't know why everything just necessitates a new drug - when nothing really seems to fix the problem. I guess that's just the nature of Western medicine. It's pretty frustrating, though, when every time we bring her in it's a new set of docs and opinions.

We have a Primary Care Physician, but she doesn't even know when Alex is in & out of the hospital. It's been months since she's even seen Alex. I guess the closest thing we get to a holistic approach is when we bring her in to the Spinal Defects Clinic, which is every 3 months. And even then we're seeing a bunch of docs from all different specialties, each diagnosing based on their respective areas.

Sorry to sound so negative - we really do have a lot to be thankful for. After such a great few weeks it's just really hard to have to come right back into the hospital, and seemingly with more questions than answers.

Please pray for Alex to beat this cold, as well as wisdom for the Dr.s in assessing the big picture. And for strength & patience - since we are definitely not finding much comfort in the hospital right now.