The Princess on Her Throne

The chair that we prayed for came in! We are so excited to have it! We were denied twice by Medicaid, but on the third try, they approved it.

The seat portion of this chair fits into two bases. One is a stroller type base, and the other is a base we use mostly around the house. It rolls very easily on the tile and can lower or raise to any level. It has been a huge blessing and has made caring for Lizzie much easier.

Lizzie loves it! She loves to sit in it and point in the direction she wants us to push her.

Outing

We finally feel a little more comfortable to take Lizzie a few places. The doctors said that this would be alright for us to do as long as we avoid big crowds. So, for the first time since she was born, we took Lizzie on an outing. We went to the Arboretum, and she was almost overwhelmed with trying to take it all in. She kept pointing and asking us, in her Lizzie way, what everything was. It was really neat to take her out for fun to someplace other than a doctors office.

First Haircuts

Both girls got their hair cut for the very first time. Ms. Deborah, Lizzie's favorite nurse, used to be a hairdresser. We fed Becca candy and sang songs with her to get her to hold still.

Brown-Eyed Girls

Lizzie now wears an eye patch two hours every day to help strengthen her left eye. The doctor told us that we will need to do this for about four months. After that time, she will need surgery to help correct the muscles in her eyes. Right now, the muscles in her eyes don't work in unison. She looks through one eye, and the opposite one crosses while it is not being used. She sometimes switches back and forth between which eye she uses, but she mostly favors her right one.

When the doctor initially used the word "surgery," my heart sank. This is not one that we were planning on. We knew that she would eventually need surgery to correct her clubbed right foot, but we had no clue about an eye surgery. However, it should be a quick one, and minor in comparison to the surgeries we have survived in the past. We will trust the Lord for this.

Baby Babble

When Becca was smaller she would lay in her bed in the mornings and just babble to herself. David and I would wake up to the sound of her sweet little voice as we heard it through the moniter. It was so cute.

Lizzie, on the other hand, does not have access to her vocal chords until I put a special valve on the end of her trach to allow her to speak. I've really missed hearing the sweet sounds of her little voice through her moniter in the mornings. Lizzie is also pretty speech delayed due to the decreased opportunity she has to practice talking.

However, she is a smart little girl, and she has done a really good job of picking up on sign language. She has about 8 or so words she can sign. They are mommy, daddy, more, please, eat, bird, music, her version of "I love you" and "wash hands" and "praise the Lord". She also points a lot for us to tell her the names of things. There are a few other word signs we are working on like thank you, dog, and help. And all of those are in addition to clapping, folding her hands to pray, pretending to suction our "trach" or feeding us a bottle, tickling us or herself, playing peek-a-boo, and blowing kisses.

Then yesterday afternoon I was sitting on the floor with both girls to play with them. Lizzie suddenly turns to me, holds out her arms, and starts randomly but intentionally wiggling her fingers and hands around. It was sign language baby babble! I wanted to cry. It didn't need a voice. It was music to my heart.

A Blessing From God

Becca caught a terrible cold with a cough this week. I’ve spent the past several nights up and down with her to give her cough medicine and to try to get the coughing fits to stop.

My next immediate concern was for Lizzie. If she caught Becca’s cough, it would mean a lot of vomiting, first of all, and a potential trip to the hospital with a respiratory infection. I tried to keep the two girls separate from each other the best that I could, but they are sisters and they love each other very much.

A day or two later Lizzie started showing symptoms of an oncoming cold. The pessimist in me thought, “Well, here we go.” However, the Lord had a different plan. Lizzie has a head cold!

Now, you tell me. How does a child with a trach and a sister with a cough end up with a head cold? That is almost unheard of, or as David said, “That is a true blessing from God.”

A Bit Of Good News

These are pictures of Lizzie in her new bath chair that we prayed for! Becca loves to help give Lizzie her "tubby".

A Bit Of Disappointing News

Last week Lizzie had a study performed on her called a pH probe. They put a plastic coated wire down her nose, through her esophagus, and into the top of her stomach. The opposite end was attached to a metal box thing as you can see in the picture. We had to leave it in for 24 hours while we went through her normal daily routine. The wire and box recorded the pH levels in her esophagus to help determine if it is GERD (gastroesophogeal reflux disorder) causing her to vomit.

I went this morning to get the test results. The doctor told me that the pH levels remained well within normal range. This means that she does not have GERD and the Nissen surgery that I described earlier will not help her. It will keep food from coming all the way up, but she will still wrench and dry heave. He told me that she would be even more miserable than she is already. He also said that it is a brain issue. Something in her brain randomly triggers causing her to vomit, or so was his best guess.

I asked the doctor what to do next. He said that he would let her other doctors and specialists know, and someone should give me a call back in a few days. This did not settle well with me. I cried for about half an hour. My always optimistic husband was a big comfort to me.

Our next plan of action to talk to her neurologist about this issue. I’ve never mentioned it to him in the past because I thought it was a digestive issue not a neurological one. We already had a follow up appointment with him scheduled within the next two weeks to make sure her anti-seizure medication is still at the correct level. I will discuss it with him then.

Please continue to pray for healing. I have these awful images in my mind of trying to send Lizzie off to school one day with a vomit bucket. I just don’t think that would work. Or trying to go to a restaurant one day with her and having her vomiting set off a chain reaction among all the costumers and wait staff. (Okay, that one actually makes me chuckle a little. I have to find some humor in this or else I’ll loose my mind.)

Please pray for peace in our hearts as we trust the Lord in this situation. He has taken care of so much for us already, and I know he can handle this one too.

Please pray for wisdom as we continue on seeking solutions.

The Nurse Thing

People ask me all the time how the nursing thing works. So, I decided to explain in this post.

We have 12 hours of nursing care for Lizzie everyday, seven days a week, and access to extra hours when we need them, like if we are going on a date night or out of town or something. So, when David and I go out, just the two of us, we leave four people in our house, Becca and her sitter, and Lizzie and her nurse. Our home is always full, and I kind of like it that way.

No, Lizzie is not portable at this point, meaning I really can’t take her places with me. This is due to three main reasons.
1. She has to be cathed and fed every three hours.
2. Her reflux requires us to hold her still and upright for at least 30 minutes after each feeding. So, by the time we cath her, feed her slowly, hold her upright for that 30 minute window after her feeding, pack her up and leave . . . well, it’s practically time to start all over again.
3. Her trach makes her extremely vulnerable to infection.

I do on occasion take her to church during the third service on Sunday morning. However, the timing fits in between cath and feeding times, and I only take her when it is not cold and flu season. Our church is really unique in that they have a classroom designed just for special needs children. This is where I put Lizzie, and her nurse stays in there with her to help her play and tend to her needs.

It is really sad that she does not get to go to many places. And as she gets older and more aware, she is starting to realize this fact and gets board and frustrated. For this reason, it is very important that Lizzie’s nurses do more than just come in to do the job and leave. They have to be caring and find creative ways to stimulate her mind and keep her happy.

Most of the nurses from the nursing agency that come to my house do a great job at this. We have one nurse, Deborah, who is here four and sometimes five days a week, and a couple of other regulars who fill in on the days that she is not here. Deborah is by far Lizzie’s favorite nurse, and I call her my personal Mary Poppins. She is a really neat older Christian lady who not only takes wonderful care of Lizzie, but also encourages and prays with me. I turn to her a lot for advice not only on Lizzie, but also about everything from organization to politics to life. The Lord sent her to us at just the right time, and I am extremely grateful.

What if a scheduled nurse can’t come that day, like, they call in sick that morning or something? Well, one of three things happens on those days.
1. If there is enough advanced warning, like a couple of days, the agency will call one of Lizzie’s other regular nurses to fill in on that date.
2. If none of her regular nurses can sub on that day, they will call a different nurse, and send them to our house a couple of days ahead of time to train on Lizzie’s care. Then they will come back on the available date.
3. If there is not enough advance notice, the agency will either do option one or two above minus the training time, or I can choose to not have a nurse that day. At which point I call my family and friends to come take care of Becca while I do Lizzie, because I can’t do both at the same time.

So, what do I do if a nurse does not do a very good job? Well, the nursing agency we use is also very caring and understanding. All I have to do is call them and ask them to please not send that nurse to my house again. And they say okay with no questions asked, or they will listen and take into consideration my concerns about a particular nurse is I have any.

What do the nurses do all day at my house? A lot! They take care of Lizzie as much or as little as I need them to. Meaning, they can do everything for her or just assist me. This way I can leave the house to run errands or work a side job, or just stay at home all day to care for and play with my girls. It’s kind of like having my own nanny. The nurses also keep track of and maintain Lizzie’s medical equipment. Deborah, aka Mary Poppins, even does Lizzie’s laundry and vacuums and dusts her room!

It really is a great set up, and there is no way I could do it without them!

Relief Has Arrived!!

The new A/C is in and working great! AND Lizzie got her half body cast off this morning! AND I get to go spend time with some of my girlfriends this evening! Woohoo!

Praise the Lord for giving us the strength to endure!

How Do YOU Spell Relief?

This weekend several commercial slogans from my childhood kept resounding in my mind. Mostly, the one for Rolaids, “How do you spell relief” and the one for Calgon bubble bath where the frazzled lady exclaims, “Calgon, take me away!”

“Why is that?” you ask. Well, let me tell you. Friday morning I heard a water trickling noise coming from the heater closet at the end of our hallway near Lizzie’s room. When I went to go check on it, the flooring that the unit sits on was completely soaked. I quickly called our landlord who made a few phone calls until she was able to find someone to come out to take a look at it. However, I had to leave to go pick up David from the airport. This was the third week so far this summer that he has been gone, and every time he left, some big crisis happens. Week 1, I broke my toe, week 2, Lizzie breaks her leg, and now week 3, our A/C starts to die and leaks water.

“No problem,” I tell myself, “our landlord’s wife will meet the A/C guy at our house while I’m gone to the airport, and he’ll fix the leak. We’ll blow a fan in the closet until it’s dry, and boom! Problem solved.”

Ha! Ha! Ha! Apparently, the emergency A/C guy was a quack trying to rip desperate customers off. An honest and dependable A/C repairman couldn’t come until the next afternoon. In the meantime, water is starting to come out of the unit in the hall and getting the carpeting wet. By Saturday morning the carpeting around the closet was so wet that it would come up between my toes when I stepped on it. And to top it all off, we discovered that the majority of the water was not in front of the heater closet, but has been pouring out the back into Lizzie’s closet where we store all of her medical equipment!

David had an event with the students most of the day on Saturday, so I was on my own to empty Lizzie’s closet and start trying to soak up the water with towels. It was a completely futile effort. I called for back up. “Mom, Dad, I need HELP!”
They came to my rescue. Our landlord also came on Saturday night to help with the efforts.

Anyway, we had to move Lizzie into Becca’s room, this is no small undertaking. And Becca has been sleeping in Lizzie’s room with the fans blowing on the now bare concrete floor of Lizzie’s closet in an attempt to prevent mold from growing.

We are supposed to get a new A/C installed today . . . we hope.

“Calgon, take me away!”

A Seat For Lizzie

Lizzie’s condition and developmental delays have created some unique needs for specialized adaptive equipment. One of her issues is that she is unable to sit up yet. We have therapists that work with her, and they are very optimistic that she will be able to at some point. (Of course the half body cast has slowed her progress down, but it is just for a few more weeks.) Lizzie has outgrown most of her baby gear designed to support an infant. This includes her baby bathtub. We put in an official request with Medicaid for a bath chair for the tub that will help support her. We were initially denied. Medicaid won’t pay for one until a child is a minimum 30 pounds in weight. Lizzie is just under 20. But praise God, we appealed it, sent them some more info, and got approval!!! We are expecting it to be shipped to our house any day now. I will post pictures of Lizzie in her bath chair as soon as it arrives, and she is out of her cast.

But, there is more. Because of her reflux, we have to keep her upright for a while after each feeding. So, we have been using her bouncy seat to accomplish this, and to allow her to play with her toys in a more upright position. Well, as you can imagine, putting a 12 month old in an infant seat is somewhat precarious. Her legs hang off the end of it, which is a potentially dangerous situation. I can’t help but wonder if this is how her leg was somehow broken. Also, there are challenges with transporting Lizzie’ from room to room in a bouncy seat without wheels. We sent in a request for a seating system called an x:panda. This will provide a safe place for Lizzie to sit while offering proper positioning to help her develop the muscles needed to sit upright unassisted. It is on a wheeled base so that we can more easily move her from room to room. It raises and lowers for floor and table time, and it comes with an optional tray table. The really nice thing about this seat is that the chair portion can one day be removed and placed into a wheelchair frame. This would just be ideal for Lizzie.

However, we have received two denials from Medicaid so far. This seating system with the particular bells and whistles we need for Lizzie costs over $1200. But, we are not giving up. We are trying to send as much info as we can to prove her medical need, and we are praying like crazy. We know that the Lord will provide just the right thing at just the right time.

Please join us in praying for this seat for Lizzie.

We're Singin' The Reflux Blues - A Lizzie Update

Ever since Lizzie was a newborn she has suffered with reflux. Not just an occasional spit-up, I mean full force projectile vomiting anywhere from one to five times a day. When she was a little bitty, I kept expecting her to grow out of it like most infants. When she hit about six or seven months old, it became so severe that she started loosing weight and did not want to eat. I don’t blame her. I wouldn’t want to eat either if I thought it would just make me vomit.

It has been very heartbreaking to see her suffer like this. I cringe every time she coughs, because it’s not that uncommon for it to end with her throwing up. She just looks so miserable when it happens, and it takes her a few minutes to recover each time.

When she started loosing weight, I took her to a GI doctor. He put in a feeding tube to use when she doesn’t want to eat. We found that it had the added benefit of getting the air off of her tummy from incorrect swallowing. All this helped for a while so we decided to start on some solids. Big mistake! Things only got worse again.

We have tried just about all the reflux med’s on the market, and continue to be unsuccessful in getting the reflux to stop. We have also had several tests and scans done to make sure everything was “hooked-up” okay, and it has all come back normal.

We have to feed her like a newborn, small amounts every three hours and keep her upright for at least thirty minutes after each feeding. Sometimes this helps, sometimes it doesn’t.

The other day we had a visit with our development disabilities doctor at Scottish Rite Hospital. He said that because there is an underlying brainstem issue, as evidenced by her breathing problems, medications would not help. She needs a surgery called a Nissan. This is a procedure that I don’t know a whole lot about, but basically they can tighten the sphincter muscle at the base of her esophagus/ top of her stomach. The problem is that there is a fine balance between making it too tight – you can’t eat solids, and not tight enough - you still reflux. You have to do just right, and there are only a handful of doctors in the area that do this procedure.

Please be praying for two things. . . well make it three:
1. Complete healing from the reflux, and no need for surgery at all
2. The upcoming doctor appointments with the GI surgeon
3. For the surgery to be a complete success and Lizzie’s ability to eat normally with no concern for reflux

Lizzie's 1st Birthday Party

I Won, I Won!

David and I ran to the Container Store after attending a friend's wedding on Saturday afternoon. I love that store, I could spend a fortune there. They were having their grand opening weekend complete with sign-ups for prizes. David and I both filled out a card and tossed them into the very large basket that was full of other entry cards. Well left shortly after that.

I stayed home this morning from church because Becca has a cold. The house phone rang and my caller id. said "Cntnr Store". When I answered, a very friendly voice congratulated me for winning the grand prize giveaway. I won a $1000.00 Elfa closet makeover! Woohoo!

I've been thinking about it. I could re-do the girl's closets. Lizzie has a ton of medical supplies that have to be kept organized, and Becca's toys could stand to be re-organized. I could also do something like our small pantry. It would be nice to maximize that space. But ultimately I've decided to give our master bedroom closet a makeover. This prize is for me, and I want to use it on me. : )

I'll have to post before and after pictures when it's all finished.

More Broken Bones

Here is the latest on our little Lizzie.

Part I
On Thursday morning I went to get Lizzie up to start her routine. I quickly noticed that she was more than a little congested. In fact, she was so congested with her oxygen levels lower than usual and her heart rate elevated (she sleeps connected to a pulse-oxometer at night) that I just automatically assumed that she had pneumonia and we would need to go to the hospital. I have to admit, I was really scared. Her pulmenologist saw her a little later that morning and told us that it was just a respiratory infection and sent us home with an antibiotic prescription.

Feeling relieved, I came home and took a long nap while Becca took hers.

Part II
After my nap, I went to Lizzie’s room to check on her. Her nurse that day, Deborah, said that Lizzie’s left thigh looked swollen. It was bad and almost hard. Panicked for the second time that day I immediately started calling her doctors. I was afraid that it might be a broken bone, a blood clot, or an indication of kidney failure. David, just 30 minutes home from the second of two back to back trips with students, and I decided to take her to the ER. At about 2:00 am we finally got the bad news. Her femur just above her knee was broken.

I cried.

We had no idea how it happened. I strained my exhausted brain thinking back to everything we had done that very long day, but still nothing. According to standard protocol we were questioned by a hospital social worker and were finally discharged around 10 am.

I am very grateful that she cannot feel the pain.

Now Mommy and Lizzie both have a broken bone.

Everyday Silliness

Same Song, Second Verse

Have you ever had something happen to you multiple times? Like, maybe you have the exact same dream several nights in a row, or you keep accidentally biting the same spot inside your cheek when you chew.

Well, this is where I find myself this morning. Instead of going to church today, I sent Becca on with a friend, and I sat on the couch. When I broke my pinky toe last week the doctor ordered me to sit and stay seated with my foot elevated for the next 10 days. (I’m now on day 7.) Isn’t that just too bad? I have doctor’s orders to sit down, and prop up my feet, and let other people serve me.

Well here’s the ironic thing. I was in a very similar situation exactly one year ago. It was the week before Lizzie was born, and the doctor put me on bed rest. I sat on the same white couch, kept my feet propped up, and had family and friends come in every day to cook, clean, and look after Becca.

When God keeps putting you in the same situation, you know he’s trying to teach or tell you something. I think that maybe in my case, He’s just giving me a break. Last year the break was to make sure I was well rested for the year that followed with Lizzie. This year, I think the break is my little reward of rest for the year I just completed.

What do you think?

This is a picture of me on bed rest exactly one year ago. I don’t have a picture for this year, unless you’d like for me to post a picture of my broken toe. Ha, ha!

Reflecting Back

Our little baby girl is about to turn 1 (on June 27th)! When I think back over the past 12 months that we’ve spent with her, in some ways the time has just flown by, but in other ways, it has been the longest year of my life. It has been truly amazing to see how God’s hand was on us every step of the way.

We have endured:
Seven major surgeries,
A total of three months in the hospital,
A few close calls,
Two ambulance rides,
Three trips to the ER,
Four trips to the ICU,
And countless doctor appointments, ultrasounds, CT scans, and MRI’s.

On the other hand, we have experienced:
Multiple shoulders to cry on,
Many hours spent in prayer,
The gift of mercy from those we know and others we know now,
Financial gifts for everything from medical expenses, to meals, to a hotel room to be near our little baby,
Jokes told at just the right time to help lighten the mood,
The opportunity to be a witness to doctors and nurses and other hospital staff,
Meals, meals, meals,
Unpacking, decorating, housecleaning and lawn services from friends and strangers – we moved in October,
A Christmas we will never forget,
And the love of Christ as so many of you wrapped your prayers and arms around us.

And for all of that, we know we can never ever re-pay, and we will be eternally grateful!

Time In The Hospital

Before and After Trach Surgery

Coming Home From The Hospital!

Play Time With Big Sister

Snuggle Time With Daddy

Lizzie's Pretty Pink Hat

My Girls!

Broken Toes and Blessings

While David was out of town on a retreat with his students, clumsy me managed to break my pinky toe. OUCH!! I passed in front of my coffee table and somehow caught my toe at just the right angle to completely snap the bone. I heard a crack, but I did not feel any pain. I quickly got up my nerve to look down and saw that my pinky on my left foot was sticking out sideways!! I thought that I had just dislocated it, so I tried to put it back into place before the pain hit. My attempts failed. I hobbled back to Lizzie's room and asked the nurse, Josesphine, if she could try to put it back into place. (This is one of the benefits of having a nurse in my house 12 hours a day.) She couldn't get it either. I grabbed my purse and keys and ran out the door to go to the hospital.

Along the way I made several phone calls including a desperate call to David, and within a few minutes we had help for Becca, whom I left at home with the nurse, and other people driving to meet me at the hospital. Wow! A couple of hours later I had extra nursing help for Lizzie to help me when her usual nurses have to leave and someone to stay the night with me. By the next morning we even had meals lined up for the next few days! Double wow!

I am so very grateful to be surrounded by such good caring friends. Not everyone has this in their life. I thank the Lord for the blessing my friends have been to me.

Well, to end this long post, the hospital sent me home with a special shoe for my foot, crutches. and a lot of pain medication! : )