A Girl and Her Cupcake

Never get between a girl and her cupcake!

Hazel's Serendipity

This last week we went to have a visit with the pulmonologist (lungs) and learned a lot about the human body. There's nothing like talking to a doctor to help you feel stupid about your understanding of basic biology.

So...Hazel's been off and on O2 her whole life and I always understood it as being related to the paralysis and her lack of muscle tone in her trunk but the Dr. said it is really much more related to her scoliosis. She actually has kyphoscoliosis, which means the curvature is side to side and front to back. The front to back curve is displacing one of her lungs and is the biggest thing keeping her from getting a good breath.  It causes her to have spots in the bottom of her lungs that are collapsed.  The parts that collapse will eventually lose the use of the blood vessels so we are concerned about that and will be looking into a surgery in the next 6 months or so.   

She's been prescribed a b-pap machine (similar to a c-pap but has 2 levels of pressure). That will be a fun little adjustment for her-bless her little heart-but hopefully won't need it much after the surgery.  The surgery will be to put a temporary expanding rod in her back that stays until she's big enough for the permanent rod when she's 10 or so.

So we are starting down the path of all the things we have to do to get her ready for the surgery...mainly get the pulmonology department to convince the orthopedic department that she needs the surgery.  That means more sleep studies and other tests.  Anyway, we are glad to have the bladder situation cleared up so that we can move on to the next thing.

Hazel's Giant Hair

Hazel's hair is totally out of control.  She has the giant fro that you can see here, but the worst part is that she has rubbed all the hair off of the back of her head...it's the worst case of baby hair I've ever seen.  I'm not really sure where to go from here but...it's gonna be a while before it's normal.

Hazel had a trip to the Spina Bifida clinic last week and we got a good report. Every one is really happy with her progress and how well she has done since the surgery.  They took her off of all her medications...we'll see how that goes.  They said she still needs to wait a while before she gets her wheels,  another year or so.
The next hurdle to get past is the lung issues so she can get rid of the O2.  We need to schedule an appointment with the pulmonologist because for some reason they are not part of the clinic. 

Big Birthday Girl

I love a good photo of the birthday girl with her cake.  

I'm glad we got this cute one of Hazie!

Our Last First Birthday

So...here's what one year old looks like on Hazie!  I can't believe we survived this year and that my baby is 1!  I took this picture this morning when we were out and about at a school activity.

Happy birthday little one, we love you!

Hazie Jay's Happy Birthday Top 10.

10. Binkies & bottles

9.  Her left hand-she's lefty!

8.  Stuffed animals  (can this child be mine?  I loath them)

7.  Music

6.  Stroller rides

5.  Snuggling

4.  Spaghetti

3.  Books

2.  Giving kisses

1.  SISTERS!

63 nights

So Hazie thought she'd squeeze in a few more nights at the hospital before she turned one!  We spent the weekend at Utah Valley this time--bringing the grand total up to 63 nights in the hospital in 1 year--and she is home now.  She really needs to be healthy this week so she can have her surgery next week.  So we need lots of extra prayers that she will be fever-free for at least the next 9 days!  Thanks!

Home Sweet Home-Issue #2

Don't I have another post with this title? I'm pretty sure I do-we're calling this Issue #2.

I've really been soaking up as much 'home' as I possibly can and it's wonderful! It is so true that bitter times make the good times sweeter. Why does that have to be? I just know there's a scripture along these lines...'opposition in all things' or something-anyway apply it here! So I'm just enjoying my own walls, my own bed, all my kids around me, coming and going unobserved and just waking up to Lowell in the morning and not a room full of strangers! It's pure heaven.

Hazie is doing well today. We've had a few little hiccups this week at home but nothing much note worthy. Over all she looks good, feels good and is getting better. In about a month she'll have a simple bladder surgery that should help TONS with this whole problem of the fevers, at least that's the hope. Unfortunatly we won't know until after the surgery is done so cross your fingers. Anyway-that is the light at the end of the tunnle for now.

7 Things I Miss the Most

Remember when you were in college and you shared an apartment with 5 other people? Remember how in the fridge there were 6 jugs of milk, all labeled with their owners names: "Heather", "Tara", "Jill" etc? Remember the shower with like, 14 bottles of hair products-also all labeled? And how you only ever bought Suave and so you'd sneak some of your roommates generic Paul Mitchell from Sally's Beauty Supply? Then you'd feel guilty/luxurious all day? Yah-those were the days.

Once, my all time favorite roommate and I got so sick of people and their labeling that we took every single thing that belonged to us in the fridge and wrote "MINE" on it. Each individual egg and stick of butter and whatnot...we thought it was funny but you know how it is, this kind of humor is only funny to the genius that thinks it up.

So I came up with a list of things that I have really missed this last month, I'm not talking about kids and hubby and family togetherness and all that-although I do miss those things-I'm talking about all the things that are "MINE" and a substitute just won't do.

1. My Bed-I've never been one to claim to need their own bed but the vinyl chair I've been sleeping on just isn't cutting it. Don't get me started on how bad I need/want my own pillows.

2. My Bathroom-I just have a rhythm in my own bathroom that cannot be reproduced in another habitat. Things just don't work out the same when I do hair and make up in a foreign bathroom. Plus, the toilet here flushes so forcefully that I swear you could flush a small pet down it with no problem what so ever. My kids are terrified of it and secretly...so am I.

3. My Paper Plates-I won't bore you with some big lie about how I hate eating off of paper plates and I want my real dishes blah, blah, blah....but they have styrofoam plates in the cafeteria (hate them) and the RMDH has dollar store paper plates (aka soggy). So, I really miss my middle-of-the-road-sturdy-yet-somewhat-green paper plates. I'm really missing my flatware too--not a big fan of the plastic fork!

4. My Privacy-I love waking up every morning (on the plastic chair) to a room full of Doctors, Interns, Students, Residents & Specialists all fresh, scrubbed and ready for the day in their white coats. My rooster hair, bad eye makeup (complete with eye boogers) and morning breath really go a long way to helping them all take me seriously during rounds.

5. My Freedom-Remember when you had to tell your mom every place you went and when you'd be back?? I have to do that here with the nursing staff. It's weird but somehow it makes me feel guilty for going down the hall to do some laundry. hmmmm...

6. My Fridge-Cold water, fresh milk, cold fruit & veggies, perishable food. I vaguely remember these things-a simpler time when I just had things on hand in case someone wanted them.

7. My Town-Never in a million, zillion years did I think I would miss Provo but...I do!? I think I just miss the familiarity and knowing where everything is. Being able to drive to the store without a printout from Google Maps seems so fabulous. I guess I can stop telling people I'm from California and claim Provo as my own!


There's no substitute for Home Sweet Home but being here with Hazie and my mom brings a little piece of home to the hospital...it's not "MINE" but it will do.

My Sweet Hazie

I know a lot of you are following our little saga on my mom's blog but if not, here's the update. I also need to get it in here for my own record.

So we went home from PCMC on July 10th, at the time I knew she wasn't better but I couldn't convince the docs and she was looking much better clinically so home we went. It took her about 3 days to get back up to a 103 fever so we were readmitted and the decision to taker her off of all her meds was made.

One of the problems we've had this whole year is her being admitted to PCMC pretreated with AB's. It just means that no matter what tests they run they don't show anything because the AB's are already working. They try to make their best guess of the most likely cause of the fevers and see how she improves. As the situation accelerated it became clear that they needed to get some tests run that did not contain any AB's--hence the decision to take her off of all the meds. The thought that she may be having an allergy to one of the meds was also a theory.

Since being off of the meds this week she has had lots of blood work done and also a CT scan, abdominal ultrasound, bone scan, shunt tap, EKG and UA. All came back normal! Her fevers have gone up and seem to be accelerating so they are assuming that the problem is not an allergy to meds. Tomorrow she is having her first MRI. I have high hopes for this since we've never had one before. By 'high hopes' I mean that we can find the problem and that it is very treatable. I'm getting more worried as time goes by and more and more 'normal' things are being eliminated as the possible answer.

This Wednesday we'll have been here for 4 weeks (minus the 3 days we were home). We've had so much help from both of our sets of parents. My mom has been here for weeks and Lowell's parents have been back and forth to LV a few times now. We've had tons of friends, neighbors and family helping with kids and meals. Thanks so much for your help, thoughts, prayers, phone calls and comments.

We Found the Solution....Sorta.

The hospital stay is almost tolerable if you have Wi-Fi and a laptop. So far we've had my parents or Lowell's but for me that means if my parents are gone or Lowell goes back to work it's pretty boring. So Lowell and I were talking about just bitting the bullet and buying one. We figured that if we bought one specifically to use when she's in the hospital then it's virtually guaranteed that she'll never be admitted again. We think it's a half descent idea given our luck and all the other things they've tried!

Please Excuse My Bad Behavior...I'm Fragile

I've been trying to think of a word to describe how I'm feeling about Hazel and I think this sums it up nicely: fragile.

For example, the other day I pulled a crazy bad parking job over at the Dollar Tree. A feisty-grandma-type decided to call me on it in spite of the fact that there were about 65 other available spots to park in. I am notorious for bad parking and normally I'd say "Ooopsie-Poodle! Sorry!" and move the car. But I was feeling 'fragile' and I took this womans head clean off. I mean it, I really laid into her. There is no question in my mind that this woman is someone's Grandmother and I am yelling like an insane person at her in the Dollar Tree parking lot about my sick baby and how she'd better leave me alone.

It gets better: I jump in my car, still cussing to myself and straighten out the car. I get out and as I get to the door of the store I see that this woman is waiting for me. She starts to talk and before I realize that she is trying to apologize--I'm already yelling at her to get away from me and how dare she speak to me. Well, I immediately burst into tears and proceed to bawl like a baby for the next 3 hours. Needless to say I didn't get anything I went to the store for that day.

Oh! How I wish that were the end of the bad behavior but I have another story....

I have a cell phone. I'm terrible about taking it with me, charging it and answering it. However, when we're in the hospital with Hazel I keep it charged and glued to my body 24/7 because you never know when someone will call with news, test results, questions or whatever.

About 3 months ago I started getting calls once a week or so from a little girl that is obviously trying to call someone else and is miss dialing and getting me. We are so familiar with each other that our conversations now go like this:

Me: Hello?
Her: Who is this?
Me: This is Miss Jen
Her: Ooops! Sorry...(click)

So the other day Little Miss Dialer calls me and I am feeling a little 'fragile'. Our conversation goes like this:

Me: Helloooo?
Her: Hi, who is this?
Me: This is Miss Jen and you need to stop calling me, ok?
Her: OK....(click)

So about 30 minutes later I get a voice message from this child's mother. She explains who she is and then gives me a big lecture about how if I have a problem with her kid I should call her and I shouldn't have yelled at her child etc, etc.. (Funny thing is I totally agree and have been known to let people have it when they get stern with my kids.) Anywhoooo, I called this lady back and gave her the 'I-have-14-calls-from-your-number-on-my-cell-phone-and-I'm-in-the-hospital
-waiting-for-calls-from-doctors' lecture right back to her on her machine. I swear, I did not yell. Not at the kid or in the message. I promise. But I felt like a gigantic b*tch. I cried all the way home from the hospital and had to go straight to bed the minute I got home.

Why am I doing this??? I'll tell you: I have these fragile moments when I can't stand the fact that other people are having a normal day and get to worry about things like parking spots and their kids inability to dial a phone. It's like the straw that broke the camel's back. How can they care about these things when my world is falling apart???

So there is a point to this post besides me and my bad, bad behavior. The point is that I am supposed to be learning things thru this experience and so far I'm just acting like a brat with a free pass to treat people badly. I'm turning into the mean lady that yells at grandmothers and scares little kids on the phone...ummm.....not cool. I'm learning that the rules still apply even if I'm having a crisis. Having patience means still showing courtesy when my fuse is less than a millimeter long and yes, when things are bad, even super bad. I don't want to teach Hazel to use her problems as an excuse to misbehave or live a bitter life. So in light of this lesson, I'm sending out an apology to Mrs. Dollar Tree Parking Lot and Little Miss Dial's Mom. I wish I could apologize in person but that's the price you pay for mistreating a stranger. No matter how fragile you are, you never have the opportunity to apologize.

Babbling With Consonants

When you have a kid with a disability or a chronic health issue it feels like your parenting skills are constantly under the microscope. You get a lot of normal questions like:
How much does she eat? When does she eat? How does she eat? Can I watch her eat?
But then there are other questions like:
Does she use her thumbs? What hand does she favor? Is she using all the fingers on that hand? How many times a day does she put her hands in her mouth? Is she putting her hands in her mouth while using her fingers and using her thumbs on the favored hand??
Ummmm...What!?!?!?
Then the fun starts all over again with some other topic or a new doctor.
So one of the questions about 4 months ago was: Is she babbling with consonants? (?!?! It was explained to me as 'mamamama' or 'babababa' as opposed to open vowel sounds like 'aaaahhh' or 'ooooooh'). At the time she was just starting with her now signature "uh-hu"...so I was worried and desperately trying to remember when my other kids started babbling with consonants (yah right!) Well, I am happy to report that Hazel is officially babbling with consonants! We've had a 'dada', a few 'nananas' and yes, it's true a 'mama'! I'm thrilled!

Why???

Why am I sitting here reading back issues of People Magazine? I'm with my daughter in the hospital...we're on day 13 and in her room I have *brand new* issues of Consumer Report, Cooking Light, Time, The Ensign, The Friend and the New Era. Not to mention the fact that I obviously have internet access and could be doing research on the strange and undiagnosable illness my baby has. (You know that it's every doctors dream to hear parents say, "I read about her symptoms on line...."!) I also have a sewing project, 3 unread novels and thank you cards I could write but no, I'm reading back issues of People.

Here are the top 10 things I've learned from my reading:

10. Prince is 50!
9. Lindsey Lohan has a girlfriend(!?) Does the train wreck ever end???
8. Tori Spelling needs to give it up and stop taking out 'ads' in Daddy's magazine.
7. Apparently you can get back into shape within 4-6 weeks of giving birth. I didn't get the memo and please...no one tell my husband.
6. The Depps, the Beckhams and the Jolie-Pitts are all neighbors with their French chateaus.
5. Reece Witherspoon is a spokesperson for Avon?!?!
4. If I read one more thing about S*x and the City, I will hurl.
3. This is the only publication with a crossword I can come close to finishing.
2.There are about 7 ads for prescription drugs in each issue.
1. I have a hard time feeling sorry for people with this much money, but I love to read about them...I just can't look away!

Many Thanks

I just wanted to thank everyone for all of your prayers and fasting for Hazel. She is starting to make a good recovery and we know it is because of the prayers of wonderful friends & family and treatment from relentless doctors.

I spent this weekend praying and pondering our situation and I felt like we will eventually figure out the connection between all of these odd illnesses. Things that seem odd and random now will eventually show themselves as connected.

Thanks again. We hope to be home by Wednesday.

Jump For Joy!

Hazel is finally starting to feel better! Yay!!! She had her shunt tapped yesterday and the test came back looking normal. They started her on heavier antibiotics (ABs) right after the tap and then this morning she started to look and act better. She still has a tiny fever but that has been controllable with Motrin and Tylenol. She's had an allergic reaction to one of the AB's so they have her on Benadryl too so she's getting a bit more sleep. She's eating well, playing, 'talking' and smiling too! These are all things we haven't seen for a while so I am one happy mom!

The bad news is that they STILL don't know what she has! We know a lot of things that she doesn't have but so far nothing conclusive to pin this whole thing on. Hmmmm....This sounds familiar...

Hazel is such a blessing to us, the hardest thing in this situation is watching your child suffer and not being able to do anything for them. I'm learning....I'm not sure what yet, other than that we are not in charge here. All you control freaks out there -and you know who you are-I'm learning how to put that one to bed! It stinks but I guess this is something I need to learn and God sent me a tiny little teacher. I hope I pass the test.

Same Story, Different Day...

Hazel's mystery illness continues-still no sign of what the exact problem is.  She was transfered up PCMC yesterday and is waiting for lab results on several viruses and other odd diseases before they relent and tap her shunt.  They want to check the spinal fluid but hate to risk introducing bacteria to the shunt.  She has developed a few other symptoms (rash, distended tummy, very low white blood cell count) so that gives them a few more clues but she is pretty uncomfortable and we really need to get to the bottom of whatever the problem is.

Again, we thank you so much for your prayers, notes, calls and good thoughts!  We will be fasting this sunday and thanks for joining us if you can!  More as things develop.

Back to the Dawing Board

Here's Hazel on her wagon ride to the CT scan this afternoon.

Hazie was admitted to the hospital this afternoon. They are still unsure what the problem is but they are much better able to help her there than I am here at home. She had a CT scan and more X rays and tons more blood work done today. They did manage to get her IV in on the first try, so that was one little bright spot in the day. We don't know if she'll stay at UVRMC or if they will transfer her up to the PCMC . We'll find out tomorrow.

Thanks so much for all of your thought and prayers. We'll let you know how she's doing when we know more.

Hazel's Health

If you have been following my mom's blog then you know a little bit about Hazel's recent struggles.  She is so sweet and such a happy little one, it's so sad to see her struggle so much with stuff we have no control over.  She has some kind of virus or infection that is just not showing itself.  Her lab work isn't giving many hints as to what the problem is.   Everyday she gets a fever (ranging from 100.5-103.5) in spite of being on antibiotics, she's pale and lethargic and unresponsive.  She has been like this for over a month now! We've been to the Dr's office about 8 times in the last 4 weeks and are literally on a first name basis with the office staff.  Needless to say we're baffled, frustrated and worried.  

We had a good friend come over Sunday to give her a blessing.  In the blessing he said that she was sent to us for a specific purpose and that her mission here is not yet fulfilled.  He said that she had many trials yet to come and that the people around her need to be faithful and still have things to learn.  He also said that God is the only one that knows what is wrong at this time.  He also said we all have to be patient.  

This is not the kind of stuff I really wanted to hear but in my heart of hearts I knew to be true. We just keep praying that we can meet her needs and be patient and learn whatever it is we need to learn fast!

Say lots of prayers for her and fast with us on Sunday if you can!  We love you and thank you all for your support and thoughts and notes and prayers.

Jen & Lowell

Hazel's PT Progress

Hazel is working so hard everyday to learn how to sit up on her own. We aren't quite there but we're getting closer everyday. She can also roll from her tummy to her back all by herself now so that is a big step for her. Keep up the good work little one! We love you!

Wordless Wednesday: Photos from Gramma's Visit