Home, But not Over

My oldest daughter got home on Friday! She worked very hard on the physical rehab floor and is now able to walk and go on the stairs with minimum help.

Unfortunately, this is not the end of this chapter. She continues to dislocate the hip, even in bed. All of the doctors and therapists agree that she will have to have the hip surgically repaired at some point. We will attend a big care conference with all of her major doctors to discuss surgery options as well as the physical needs in the house.

The house is unsafe for three of us. There is no real option to move as our finacial situation has worsen in the last few years. Social workers are helping us sort out what type of help we might qualify for, but we are slipping through many cracks in the system.

I do know that God will deliever us. One way or another things will change and there will be some solutions. We all just need to stay postive and hopeful.

Meanwhile, my youngest contiues to have spinal cord impingment. She will be walking and suddenly her legs will give out. This leads to falls and then dislocatoins in the knee, shoulder, and so on. The surgeon told us there is no way to solve this problem, but I do not accept that. We just need to find the right balance of movement and rest.

I thank all of you for your conituned support and prayers.

Hosptial Bound

My daughter will be admitted to the hospital tomorrow. We do not know how long she will stay in or what will come if it.

Please pray...

Funny Sayings

We are waiting upon the Lord to work our troubles out. As we wait, we are reminded to count our blessings. We can best do that in remembering the funny things our kids say.

When I wake up, I am going to go to take a nap.

You better stop shaking your head or it will pop off and roll out the door.

Customer: How big is your pizza?
Waitress: 8 slices
Customer: Please only cut it into 2 pieces, I am not that hungry.

You made me laugh so hard that the pill almost came out my nose!

Don't make me snap my fingers in a z formation
exclamation
elbow, elbow,
wrist, wrist,
Oh, you just got this!

I so so poud!

I wonder what will happen if I push this big green button. Push!

Mommy why does Daddy have to go to work?
To make money so we can eat.
Mommy, you're silly, we don't eat money!

Looking at the Hope Diamond: "It's just a stinking necklace!"

As my older daughter and I watched as my son threw a tantrum she asked, "Mommy, did I ever act that way?"
"Yes, except your fits were bigger."
"I'm so sorry, Mommy."

You never know!

As I was pushing my bald 2 yr old in the grocery, she kept asking if we were finished shopping. This went on for close to an hour. Finally she caught the eye of an elderly shopper and shouted out, "Help me!"

Aflak on fire!

I just bought a new black and white spotted blouse. I was feeling good until my son came up to me and said, "I know, your a cow!" thinking I was in costume.

"I want a doctor! I want a doctor!" my 5 yr old daughter shouted in ICU after her spinal fusion surgery. The room was filled with doctors, so I asked her why she needed one. "So I can punch them!" For the next couple of days all of the nurses told the doctors to go into that little girls room and tell her that you are a doctor.

"Why do we have to wait so long to see the Constitution and the Declaration of Independence."
"Because a very important person is in there."
"Don't those pieces of paper say that 'All men are created equal?'"
Yes, you just defined irony."

"At the Last Supper did Jesus drink the wine and eat the bread?"

One day my husband asked my youngest daughter, "Hey, will this cup cover my bald spot?"
She shook her head no.
"The napkin?"
No.
"The saucer?"
No.
Then she pulled out the large dinner plate and handed it to him.

Why do we drive on a parkway and park on a driveway?

Blessings from Heaven

Yesterday was a dark day.  We had word from our social worker and basically the conclusion is I am unable to take care of my children and our house is not safe for us.  This is a big pill to swallow, but is needed to get the help we need.  The emotional ramifications are stunning.  I cannot even count on needed help that might come as result of this revelation.

We also talked to the orthopedic surgeon about our oldest.  Because she has not showed marked improvement in the area of pain, we are unsure what to do.  He explained that a torn labial tendon will not heal on its own.  He thinks that the tendon is getting caught like a carpet in a door.  This causes the visual deformation of the hip at times.

He went on to explain the two options for surgery.  One is arthroscopic and the other is a surgical dislocation.  With the arthroscopic option the tendon can be trimmed or repaired depending on what is seen once they are inside.  He told us that the MRI with contrast does not give the whole scope of damage, only that there is damage.  They could also attach an artificial tendon into the bone with screws.

The surgical dislocation involves completely dislocating the hip so they can see everything.  After he talked about cutting off part of her bone, I could listen no more.

He also said that even with the surgery, most people still have pain.  His goal is to try to control the pain as much as possible to give us an accurate picture of the pain and where it is coming from.

Most people that have this injury are professional athletes that tear the tendon, but can still function without pain if they tone down the level of activities.  For her, she did this sitting in a chair and it has lead to complete bed rest and no use of the leg.

She will have lasting pain no matter what we do.

It was all of this on my mind last night when I felt as low as I can remember for a long time.  There was no one left to fight with to get them to help my daughter.  There was nothing I could do to help her.  I had become a hindrance in the whole process of getting my children help.

I felt completely alone and unable to do anything about it.  It was a desperate, lonely, dark feeling.  I had nothing left to do other than giving it to God.  All of my fears, loneliness, anger, doubt, pain, concern and so on.  

So what does God do with it?  He sends people to call and visit that in my wildest dreams I could not have picked better people to talk to.  One was a woman that has gone through health issues with her child.  She also worked in the health field and was the exact person to understand more of what I am going through.

I got a letter from a old college friend.  My father called to see how I was doing.

I realized in a phone conversation with my mom that I have fully retreated from all of my friendships.  This self alienation  made me even more upset and frustrated.  It was not people retreating from me, it was me retreating from people.

Another friend called to see how I was doing.  And as I was on the phone with her, a friend comes over to spend time with my oldest daughter.  Visits are the best pain medicine!

Just as she arrived and I was talking out side with her mom, a truck pulls up and my friends from Navajoland pull up with two of there daughters!  I just sobbed.  

I gave my loneliness to God and he did so many amazing things to answer this prayer.   Just when I thought it was time for me to give up, He comes in and wakens my faith with blessings from Heaven!

Not Unexpected News

We just got a call from the hospital and there is a tear in my daughter's tendon that keeps her hip in place. The chance of surgery is very high as people with EDS do not heal well. She also popped it out again last night at about 1:00AM.

It is a relief knowing what kind of monster we are facing, but then again it is scary. I feel so badly for my daughter and for 2 1/2 weeks on bed rest and more on the way.

We have exhasted all our ideas for things to do while in bed lying down. She really cannot sit up. Any ideas out there?

Answered Prayers

In the last 2 weeks, things in our house have changed. My oldest has been in bed and in the dining room because she is still on bed rest. She now has to use a potty chair because it hurts too much to use the regular bathroom. She has missed 14 of the first 28 days of school.

My oldest had an arthrogram today and it lasted a lot longer than we had anticipated. When she was over an hour past what we thought, but my husband and I were sick to our stomachs. We left the hospital with no answers, but she did well in recovery. She did have a lot of pain when she finally came to.

My husband was away this week so I was care taking sometimes 20 hours a day. We have had multiple doctor visits and communications despite our desire to cut some of these appointments. The new wheelchair is so heavy that I am completely unable to load and unload it. I did have to pick it up when it first arrived as it fell out of the car onto my leg!

My youngest daughter continues to be sent home due to scary spinal issues as well as pain. It is putting a real strain on the school, the teachers, the nurse and me. It did not help matters when her spine surgeon wrote a script allowing her to sit on the floor because she cried in the office visit. She got injured multiple times a day because of this and I finally had to put a stop to it.

We had an appointment with a new group of doctors at Children's that specialize in taking care of chonically ill children and thier families. It is a medical home model and I really hope it works. I talked to them for 3 hours about the girls and our family. It sounds like they can help us with some pieces of our situation. I am hopeful, but far from saying our ordeal is over.

Before the appointment, I fasted as result of a suggestion from a sister in Christ. I told her that I did not even know what questions to ask at this point. By the end of the day, (actually at about 2:00AM) I had a list of questions.

God right to work in answsering many of my prayers the next day. My husband came home early, a issue with our insurnace company was in the works to be solved and we had assuance from this newe group of doctors that they would assist us in creating a safe environment at home.

We still do not know what the future will looke like but we finally might be at the point that we can start to plan on some of the "what ifs". Part of this is the realization that we will no longer be considered a "normal family." Our future will include surgeries, wheelchairs, pain and other things that we never dreamed we would have to go through.

We will never be normal but I know that we are blessed.