Our Little Pumpkin is 5!

Okay, so there weren't any pony rides or carnival rides, but I'd say Natalie's birthday party was lots of fun.  I still can't believe it's been five years since she came into our lives.  What a blessing she has been to not only our family, but to friends and people who have never even met her.  Look at that beautiful face!

Since Natalie's birthday is in the fall, and she doesn't necessarily care about Disney princesses, I decided to make a pumpkin cake for her this year.  I had fun making it, and I think it turned out pretty well!

And if you're going to have a pumpkin cake, you've gotta have some candy corn!

Natalie's day started out with a spa treatment...a relaxing bath, massage and mani-pedi.  Check out those bright pink nails!  :)

We held the big party at Steve and Brittany's new home...they just moved in a couple of weeks ago.  Thanks for letting us invade your space!

Grandma Cheryl enjoyed lots of snuggle time with Natalie.

Onto the presents...what a lucky girl!

Her cousins love to help her unwrap...

Auntie Carolyn made this beautiful shawl and matching leggings for Natalie.

Uncle Tim picked out a couple of great books!  We love Snuggle Puppy.

Grandma Lori found some fun bath stuff for Natalie--she also got her a new swing for our back yard. (Sorry, I don't have a picture of it yet!) The old swing washed away with the flood.  :*(  Here is Grandma Lori and her granddaughters, Meredith and Natalie.

Grandma & Papa Miller are getting her a new twin size bed for her new room--they also found a pretty picture to hang on her wall.  Wowee, she's spoiled!  :)  

There were many other presents...here's a picture of them.  Thank you for all of the great stuff!  I can't wait to find a place for all of it in her new room.

Then it was time to blow out the candles.

Natalie always gets help with that, as well.  Doesn't Cousin Stella look so cute?!?

It was a fun day to celebrate one special little girl, who couldn't care less about cake and presents and parties.  She got her favorite present...snuggled in on Daddy's chest.

Finally...BACK TO SCHOOL!

It's been seven weeks now since Natalie had surgery on her hips, and she's finally able to join other kids in her preschool class!  Today was DAY ONE of getting things back to normal for Natalie...and it went well.  The original plan was to get her back into school the day after her cast was removed, but of course I had not anticipated Natalie's level of discomfort following the removal of the cast.  Her legs have little to no muscle tone and moving them around is quite painful for Nat.  Each day gets better, but she is required to wear the brace for most of the day and all night for another few weeks.  Physical therapy will be important in getting her back to her old self--and that means we are taking her to PT at the hospital in addition to her school PT time.  Hopefully, we can get those legs moving again soon!!

(L to R) Terri, Linda & Jeanne
Linda is Natalie's teacher; Jeanne and Terri are aides 

Because she needs to wear her brace most of the day, Natalie doesn't fit in her wheelchair.  Until then, we're improvising with this bean bag!  :)

Natalie is back in her wheelchair...sometimes

Smiles are returning, slowly but surely!

Cast-Free is the Way to BE!!!

It's Dr. Haasbeek!  

Well, it's been over a day since Natalie's cast was removed, and I can report that Natalie is much happier than yesterday!  Yesterday started out really well, and Natalie was a happy girl on the way to Devils Lake.  When we got to the clinic, she was a little upset about getting the cast taken off---mainly due to the vibration from the saw and the pulling as the cast was taken off.  Whew, was it nice to throw that thing in the trash can!  :)

What I hadn't anticipated was just how sore her muscles would be following the removal of the cast.  Her legs are SUPER floppy and have no muscle tone.  Moving these muscles in ways Natalie hasn't done in six weeks was a little frustrating for Nat.

Dr. Haasbeek was very pleased with Natalie's x-rays and said everything has turned out just as planned.  Now it's important to get her into lots of physical therapy in the months to come to get that muscle tone back.  On a side note, we've met many doctors over the years with Natalie, and I have to say that Dr. Haasbeek is one of the top doctors we've had the pleasure of meeting.  On one of our visits, we learned that he goes to Ecuador to do orthopedic surgery on kids there---it doesn't surprise me in the least as he was very caring and kind to Natalie and the rest of us.  During Natalie's 2-week post op visit, he complimented me on how well I took care of her cast.  I say this not to brag, but to note that many doctors don't take the time to encourage parents and show them support, and this meant a lot to me.  Anyway, I highly recommend him.  He's a fantastic doctor.

So, back to yesterday---the ride home was pretty good, but eventually, the pain caught up with Nat and she had a rough evening.  The good thing is, she fell asleep easily and didn't wake up all night last night.  Today was supposed to be her first week of school, but I think we're putting that off until Monday---or Friday if I feel she can do it.  I really want her getting back into the swing of things.  She's missed out on a lot of school, as her whole summer school session was canceled this year as well thanks to the ol' Mouse River.

Today has been much better for Nat.  She's still in a brace for most of the day (for the next three weeks), as well as overnight (for a few months), but it's much less cumbersome than that big, pink monstrosity of a cast.

Here's to hoping things get back to normal as soon as possible!

Big Changes!

It seems our lives are all about big changes these days.  Natalie has one MAJOR change quickly approaching.  It's the day we've waited for for five and a half weeks:  THE CAST COMES OFF!  What a relief it will be for all involved.  

On Tuesday, we will travel to Devils Lake to see Dr. Haasbeek one more time (until the semi-annual visits begin).  This time, he'll take another x-ray and remove the cast, which will be replaced at night with a brace of some sort.  I'm really anxious to see what she's like under that big ol' cast.  The first few weeks, I had no problems with cast care, but as soon as Natalie really started to eat more, keeping it dry became nearly impossible.  The way the diapering works, it's inevitable that urine seeps up the back each night while she sleeps.  Every morning, I dry out Natalie's cast with a hair dryer so it doesn't become too stinky.  It does the trick, but it's certainly not fun for either of us!

Of course, as soon as the cast comes off, Natalie can return to school!  We're so excited for her; she's had to put up with a lot over the past six weeks, so this will be quite the treat for her to be back with her classmates and teachers doing all the things she loves to do in school.  This is all possible because of the kindness and generosity of my relatives, Dave & Marsha DesLauriers.  We are currently occupying the top floor of their home in northwest Minot, while they are living downstairs.  It's been wonderful to be back together again as a family.

The biggest change of all will come in maybe a month or so when we will finally move back into our home on Fairway.  Work continues on the house, but most things now are up to the professionals, like plumbing, flooring, HVAC & sheetrockers.  Natalie will have an all new room that has grown by a few feet and will now have a door set on an angle for easy access.  She'll also have a new bathroom suited for her, complete with a roll-in shower, flooring that will be wheelchair-friendly, a whirlpool tub which we know she will LOVE, and a desk area in the family room that will be just for her.  What a lucky girl!!

There's much more to come...stay tuned!

The Pink Cast

It's less than three weeks until the cast comes off!  Wait a minute, she has to wear it for another two weeks and five days?  Ugh.  Poor girl.  Last week we traveled to Devils Lake to see Dr. Haasbeek at his satellite clinic.  There's good news and bad news.

 

First, let's start with the really good news...Natalie's bones are healing really well and everything looks perfect on the x-ray.  Her cast is also in good shape, so that was encouraging. 

You can see it now has some beautiful autographs adorning it these days.

 Cousin Rhett did a great job of writing his name on Nat's cast!

 Okay, okay...Cal didn't write his own name...but he DID do the beautiful scribble marks below it!

 Much more smiling these days!

Okay, now for the bad news...which you already know.  In total, Natalie will have her cast on for just a day under six weeks.  I was really hopeful that it would be something more along the lines of five weeks, but I'm not the doctor.  Nat's doing much better sleeping these days and she's happier during the day, too.  She has her moments, especially late in the day, where she gets frustrated, and I have to admit that I do as well.  Needless to say, we'll all be happy when it comes off!

So, as many of you know, we've been living in Sherwood while Perry rebuilds the house.  As of tomorrow, we'll be Minot residents again!  Some very gracious family members have offered their home to us until we can get back in OUR home.  It will be so nice to be reunited with Daddy---who misses his kids very much.  this also means Natalie will be returning to school!  I'm not sure of the details yet, since Natalie is still in a cast, but we'll know soon.  I'm just glad we're on the road home now.  We'll get there soon. 

Beautiful Moments

I have just a quick few lines to share with you as we prepare for Natalie's two week followup appointment with Dr. Haasbeek.

I think all who have followed Natalie's story know just how fragile she is and how miraculous her life is to us.  When you raise a child with disabilities, there comes a point in her life where she can no longer do what other infants her age can do.  When she's young and small, you don't notice it as much, but now that Natalie is growing into a young girl, it's becoming clear just how little she can do for herself. 

Of course, this is not a bad thing; it's who she is. 

Today, I had a beautiful few moments alone with Natalie as I washed her hair and gave her a sponge bath.  Her cast makes things a little more difficult, but I really cherished that time this morning when she became limp in my arms, fully enjoying the touch of the wash cloth and the aroma of the shampoo.  It is incredibly humbling to be the person completely in charge of another human being's life.  As tough as it gets...and it gets really tough sometimes...these moments are the moments I cannot and will not ever forget.  They recharge my batteries and remind me just how important my job is.

Tomorrow we travel to Devils Lake to meet Dr. Haasbeek at a clinic there to see just how Natalie is recovering from her surgery.  Please pray for a positive visit---Natalie is becoming increasingly frustrated with the cast, which is making nighttime difficult.

Natalie's appetite is back in full force, and she is generally a happy girl---she just tries to stretch her legs out and can't, which triggers some crying fits throughout the day.  We'll hope the cast won't need to be on much longer!  More tomorrow...for now, good night!

One Week Down...

Okie dokie ladies and gents...sorry it's been so long since my last post about Natalie. It was much easier to post while Natalie was in the hospital!

After a long couple of days for Natalie in the hospital on Wednesday and Thursday, she really started to do much better, and by Friday morning, we were confident enough to take her home. At the time, she was not eating much...or I should say, she wasn't eating at all. I guess it really didn't surprise me because she wasn't a big eater before the surgery, and with all of the pain and drugs, I wouldn't feel like eating, either!

When we got home on Friday night, we tucked her into her little hospital bed in the living room. It's the perfect size for her and it fits just right by the picture window so she can feel the sunlight while she recovers.

Under the covers, you can see that she has quite the cast---it's called a spica cast that goes from her ribs to her ankles, with an opening for a diaper and a bar to keep her legs apart. That bar also comes in handy for picking her up and holding her.

I know it looks uncomfortable, but Natalie seems to be handling it really well for the most part. She actually really loves sleeping on her side, so this position is very good for her---she usually sleeps the best when I get her positioned this way. I've learned the fine art of pillow sculpture to help keep Natalie comfortable.

One of the most difficult things is keeping her moving around. We can't let her sit in one position for too long so she doesn't get sores underneath the cast, so I move her from front to back and side to side every couple of hours. Of course, she moves around more than that because I hold her quite a bit or put her in her modified wheelchair, but this also means that she needs to be repositioned at night. Needless to say, I feel like I have a newborn, because I'm waking up four to five times a night to make sure she is repositioned! She enjoys tummy time quite a bit, which is strange, because she has never liked it before.

Pain management and feedings are the most difficult aspects of this whole rehab...at least it is for me. Nat is on hydrocodone, which helps with the pain, but also makes her sleepy. It's my goal to make sure she has as little pain as possible during this recovery, but she has been so reluctant to eat as well. Keeping her sleepy means she isn't interested in food, but she needs that food to stay healthy! She's slowly requiring less and less pain medication and her appetite is reappearing, so I will continue to pray that her little tummy can handle all of this.

So, it's one week down and three or four to go. We won't know until Dr. Haasbeek tells us---and our first appointment with him is September 8th. Hopefully she heals well before then and he can give us good news about when her cast could possibly come off. Thank you for your patience and your prayers!

Melissa

Natalie's Long Night

This morning; Natalie's eyes are open, but she's very groggy!

It was a long night last night for our little peanut, Natalie. It's a tricky situation trying to control her pain without putting too much medicine into her system and causing her to have breathing problems. Last night, she received morphine nearly every hour on the hour, along with a dose of Valium to relax her muscles. At about 2 a.m., we got a little concerned that she was just getting too much morphine and that there had to be another option--so the pediatrician on call was alerted to the situation. It was about then that Natalie started to calm down and she went to sleep. Luckily, she didn't require the morphine for another three hours, so we're hoping that's the corner she needed to turn to have a more relaxing Thursday.

Right now, she's resting peacefully in her hospital bed. The plan is to stay another night, until we really feel she's comfortable with the medication and has a little less pain. She hasn't eaten anything since Tuesday night, so I'd really like to get some food in her tummy today.

It's Daddy's birthday today, he's 30 YEARS OLD! Hopefully Natalie feels much better today, I think that would make him happiest of all.

Please continue your prayers for Natalie as she is really struggling through her recovery.

Thank you! Melissa

Prayers for Natalie

Natalie really needs your prayers right now! Please send your prayers for Natalie's pain to lessen. She has been given a steady dose of morphine for the past few hours, but eventually it wears off, and we need the pain to go away. Too much of this medicine can cause her to have breathing problems, so we can't over-do it.

The afternoon has been long. She came back from the PACU very tired and groggy, and eventually started fighting the cast. Of course, the tightening of those leg muscles is causing her pain, so she's basically either sleeping or angry right now. I would give anything to take this pain away, but I can't---so I will continue my prayers! Thank you for YOUR prayers!

Natalie did get a big surprise this afternoon, as Grandpa Jim made the drive over to visit with Natalie for a few hours. Thanks, Grandpa!
Grandma & Papa Miller and Grandma Lori also visited for a while this afternoon, but it's been touch and go for a while, so it was a very sad visit for them.

More later...

Surgery is Over!

(Natalie, pre-surgery)

We just heard from the nurse--Natalie made it through surgery with flying colors. What a relief! They are putting on her cast as I type this, then she will spend a short amount of time in the recovery unit before heading up to her room to be with us.

Thank you for your prayers, please continue those prayers as she recovers and is at high risk for contracting pneumonia. We are also not sure yet whether she will need a blood transfusion. Everything looks good so far, though!

I mentioned this on facebook, but I'll also note it here: her nurse during surgery is named Cheryl, the same name as Natalie's big sister in Heaven. Cheryl is her guardian angel today. :)

If you have any special words you'd like to share with Natalie, post it in the comments section here and I will read them to her today. Thank you for all of the love you have shown for our Sweet Natalie B!

Here We Go!

Natalie this morning before surgery; this is a teddy bear she received from the hospital

Natalie was just wheeled into the operating room about 30 minutes ago; we are hoping to get a call soon that surgery has begun. After that, we won't hear anything for a couple of hours.

Nat had a great morning, she was happy and alert and had lots of smiles for us. She then fell asleep as soon as she was laid on the bed to be transported. We were so happy that she was so relaxed!

We had a long conversation with the doctor, the nurses, the anesthesiologists...everyone involved in the surgery. They were all so wonderful and caring, that our minds were put at ease--at least for a little while. The nurse taking care of Natalie has worked with Dr. Haasbeek for years and she said she's happy she could be in the room since they make a great team. One nurse commented, "He's the best," referring to Dr. Haasbeek. Isn't that nice to hear? Natalie deserves only the best.

I'll update more later. Prayers for Natalie!!!

Packing Our Bags...Again

Pack, unpack, repeat. This seems to be the recurring theme for our family these days. Tonight, I'm packing our bags for a trip to Grand Forks. This trip won't be as fun-filled as the last, but it's one we can't avoid. Natalie has surgery on her hips Wednesday morning in an effort to create better joints for her and hopefully reduce any pain she is having and stop her from having any future pain. Take a look at the previous blog post if you need more information about what will happen on Wednesday.

Right now, Natalie needs your prayers. Tonight I will pray for safe travels, a comfortable car ride for Natalie, safe surgery, Natalie's doctors and nurses, and comfort in the weeks following the surgery. As always, I put my trust in the Lord--He will get us through this no matter what happens.

I promise to keep you updated throughout the week. A new feature on this Web site is email subscription to blog updates. Sign up if you'd like to keep up-to-date on what's happening and be notified by email.

Thank you all for your prayers for Sweet Natalie B!

Hip Surgery

Today was a very long day for Natalie, her mommy and her daddy. As many of you already know, Natalie will soon have surgery on her little hips; here are the details.

A couple of weeks ago, at a horse therapy session, Natalie's physical therapist noticed a popping in her right hip. She mentioned how she hoped it wasn't causing her any discomfort, but she was really happy that day, so we thought nothing more of it.

Then, all last week, I noticed Natalie was become more irritated during the day than normal, and she was having trouble falling asleep at night. My first thought always turns to seizure activity when Natalie's attitude changes. Then I realized that she would have trouble falling asleep, but once she got to sleep, she would sleep all night. In the past, seizure activity has caused restless nights for Natalie. That's when I remembered what her physical therapist had said about Natalie's hip popping. I turned Natalie over on her other side to sleep that night and she fell asleep so quickly, I immediately felt guilty for causing her pain up until that night.

The next day, we took her to her pediatrician in Minot, and x-rays confirmed the dislocated hip. I may have explained this in her last post, so I apologize if I'm a bit redundant, but because Natalie doesn't walk, she doesn't get the weight-bearing on her hip that the rest of us do. The socket for her right hip is virtually non-existent, and because of that, her hip bone has slipped out of the socket area and up. It's likely been like this for quite some time, but recently became irritated for reasons unknown to us.

So, today Natalie, Perry and I drove to Grand Forks to meet the only pediatric orthopedic surgeon in North Dakota, Dr. Jeffrey Haasbeek. Within moments of examining her, he knew she would need surgery to fix her hip. I have to say it was quite a shock, and I started crying immediately. Natalie has never had a true surgery, and I was living in this fairy tale world where I assumed she would never need surgery in her lifetime.

At first, I followed along and agreed that it was the best route, but then of course we began questioning the need for something like this on a girl who has already been through so much in her nearly five years in this world. The doctor assured us that if it were his daughter, he would have it done for her. It would likely cause her pain in the near future, if it isn't already, and later on in life, it's not as easy of a problem to fix.

The procedure is called a femoral osteotomy, and she will have this done to both hips since her left hip is also at a greater risk of dislocation. Natalie has been doing well since last week; she hasn't been upset or irritated. Dr. Haasbeek agreed that allowing her to go on vacation at the lake and then doing the procedure after was a great idea. She will be uncomfortable for a week or so after the procedure, but will also be in a cast from her waist down for four to five weeks in order to create the pressure from the femur into the hip socket.

The surgery is set for August 24th in Grand Forks. I ask you to please pray for her as this is a 2-hour surgery and carries risks with it, especially since she is handicapped and more susceptible to pneumonia.

I started this blog post last night, but was interrupted by Natalie--she wanted to snuggle. I've done lots of thinking about this, and I'm sure I will do much more until surgery day. Being Natalie's mommy is many things: joyful, frustrating, rewarding, challenging. Going through something like this is frustrating. We've seen Natalie nearly die---she had a horrible NICU journey. She's battled seizures and blindness. Watching a beautiful little girl like this have to take on such incredible challenges is certainly the hardest thing we'll ever have to do as parents. I wish I could take it all away, and I ask God all of the time why she has to endure this. I pray for her constantly and hope that she is truly a happy girl despite all of the hardships she faces. Seeing her smile is always reassuring for us.

So, again, I ask for your prayers for Natalie. Of course, we will keep you updated on everything going on in her life and will bring a computer along with us to the hospital. Thank you for loving Natalie.

Dream Catchers / My Poor Baby!

Tonight was Natalie's last night of Dream Catchers. It was her first year playing on the team, and she had a grand ol' time. She was so cute out there, wheeling around the bases with her head tilted back, smiling. It's such a great thing Michelle has put together for kids with disabilities--we can't thank her enough. Here she is accepting her award. I'm so proud of her!
Natalie was really happy tonight...lots of smiles and eyes wide open.

Rounding third and heading for home!

We have some sad news to report, I'm afraid. Natalie has been acting strange the past week or so. She isn't as happy throughout the day as she normally is, and has trouble getting to sleep at night. I always worry that this is due to an increase in seizure activity. However, at last week's physical therapy session, her physical therapist mentioned something about Natalie's hip popping a bit and she hoped it wasn't causing her any discomfort.

So, last night, I tried turning Nat on her other side before going to bed. That did the trick; she relaxed and went right to sleep. So, today we got her in to see her pediatrician, who ordered an x-ray. It showed what we had suspected...she has a dislocated right hip. It's a little hard to explain, but since Natalie doesn't walk, she doesn't put pressure on those hip joints. That pressure creates the cup-shaped socket for the end of her femur to fit in; but in this situation, that socket is basically flat. Her femur is pushed out a bit and that is what is causing her such discomfort.

We are waiting to hear back from a doctor in Grand Forks who will be caring for Natalie. We're not sure what he will recommend at this point, so I'm not going to speculate. I hope that it's an easy fix and we can manage the pain with ibuprofen until it is "fixed." Our poor little girl is such a little trooper---I feel horrible that I didn't figure this out before last night. Please pray for her speedy recovery! She was really happy tonight, so please know that she is not in constant pain with this hip, I'm sure it just bugs her at certain times depending on how she is positioned. We'll let you know more when we know more!

This & That

It's been a busy month and a half since I last blogged here. Perry does a lot of basketball reffing in January and February, and that means many nights, it's just the three of us hanging out. While we would rather have Daddy home, it has been good for me to learn how to care for the kids on my own.

A couple of weeks ago, on one of Perry's few days off, we made a trip to a "special pool" in Stanley. It's the Ina Mae Rude Aquatic Center, and it's a wonderful heated pool. It's really sad that Minot doesn't have one, but luckily, Stanley isn't too far away. So, on that cold February day, we packed up and headed to Stanley--along with Auntie Carolyn, Cousin Meredith and Grandma Lori. It was a really nice afternoon, and the aquatic center is fabulous. Natalie LOVED the warm water--it's 92 degrees--and the pool includes a jetted tub area that Natalie really enjoyed. She spent the whole time smiling...how precious! We'll have to go back soon...and next time we'll have to make sure the whole family can make the trip.

It's been a long winter in North Dakota---and typically by March, we're enjoying temperatures above freezing and watching the snow melt...not this year, though. It's been frigid here, and we're all getting a little stir crazy. The one saving grace is that we have a big window in our house that faces south...so every day we set up the pillows and soak up the sun. If we close our eyes, it almost feels like summer. Opening them reveals the harsh reality that there is still three feet of snow in our front yard. Bummer. By the way---the bottom window isn't fogged over, that's the snow bank in our front yard. :(

Natalie does a really good job of sitting in her wheelchair now. We often have her in it in the house these days---it gives her great support. We're so thankful that we found a home with such an open layout so that using this wheelchair is a possibility!

The biggest bummer of all is our latest round of illnesses in our house. Natalie missed a week of school thanks to this cold virus that kept her up coughing at night. We were really worried for a while that it was RSV, but a quick trip to the doctor revealed that it was just a run-of-the-mill cold. It's making its rounds around the family, but hopefully it'll be gone soon.

Meanwhile, Natalie is doing great in school. It's hard to believe, but there are really only a couple of months left until summer. What?!?

Before then, we'll meet another new doctor. Natalie's neurologist in Fargo, Dr. El-Zind, left for Indiana in December, meaning the closest pediatric neurologist is now in Minneapolis or Sioux Falls. Since we have family in Sioux Falls, we're headed there at the end of the month! I love North Dakota, and I love Minot, but living here is not very convenient when you have a special needs child who needs to see an array of doctors. We'll hope this new doctor is as good as Dr. El-Zind--we look forward to meeting her.

Here's a video of Natalie and Calvin I took last night. They are so cute together; Calvin loves to nuzzle up to Natalie, and Natalie loves all of the noise Calvin makes. (Note Calvin's cough--as referenced above!)