Absence

I apologize for my absence in updating. I have TONS of pictures to upload and edit and stories to share...but...there has been lots going on in our home.

SICKNESS!

Lilah has been sick for 12 days straight. Fevers. Diarrhea. Breathing Treatments. MEDS upon MEDS upon MEDS.

In the midst of that the older three got the stomach bug this weekend. One started..and the rest kept on and on and on. I have been crazy disinfecting, cleaning, etc. The older three are better, but Lilah...she has progressively gotten worse.

Friday to Sunday I gave round the clock Motrin and Tylenol to keep her 102.8 temp away.Monday I took her back to the pediatrician. She was given a breathing treatment in the office. Her o2 stats were 93-96 before the treatment. After...99. Her WBC was 21. 3 times the normal.

Lilah had a shot of Rocephin. Then more meds were given.

Yesterday she was better for about 2 hours. THEN...the moaning started again. Miserable. She was just miserable. Last night at 11:47- diarrhea again and the fever came back. I gave her motrin. I rocked her back to sleep and prayed for her to get well. At 5:43am...another diarrhea diaper. Wheezing. I gave her a treatment, tylenol and began to get VERY concerned.

I consider myself a patient person(Thank you God for giving me Lilah to teach me that quality even more so), but after 12 days. I had HAD enough of this.

I took Lilah back to the pediatrician today and she was given another shot of Rocephin. Her diarrhea is so bad that....well, let's just say that the diapers aren't working and her hiney is very red and swollen. So, meds to stop the diarrhea. Meds for her hiney.
Here is a list of Lilah's daily meds:

• Oral Antibiotic
• Lotemax-eye drops
• Truspot-eye drops
• Singulair
• Albuterol
• Pulmicort
• Axid
• Mix for her sore throat
• Immodium
• Nystatin..for the bum

I am praying that WHATEVER this is will leave her body once and for all!!

I promise to update the stories and pictures soon...but Lilah needs me.

Thank you for keeping her in your prayers!

Sorry!

I am so sorry I haven't updated!

My home has been invaded by the NASTY stomach bug for the last week. I will update soon!

MUCH LOVE and God bless!


Thank you for the prayers!!

No fun at all

Saturday Morning Lilah began having difficulty breathing. I got her nebulizer out and started treatments. She was running a 102.7 temp. I gave Tylenol and then three hours later...I gave her Motrin. The more I did the less worked. I did treatments all day and into the night. Every two hours I was filling the vile with Albuterol and giving her a treatment. Her fever wasn't breaking and she was still wheezing...and miserable.

Nothing worked!

Sunday Morning I took Lilah to the Urgent Care center. They listened to her, watched her o2 saturation, and said she needed to go to the hospital right away.

I immediately rushed Lilah to Memorial Hospital.

They took her quickly to triage and started treatments. Albuterol, then fifteen minutes later...Duoneb, then albuterol again. In the minutes between the treatments they ran tests. A chest X-ray, an IV started and blood work to see what her WBC was. The ER doctor, residents(MMC is a teaching hospital), and my pediatrician decided Lilah needed to be admitted.

The Respiratory Therapists did breathing treatments with chest compressions every two hours.

Sunday night was one of the longest nights. Lilah moaned, cried, screamed, and fought all night long. Her fever would not break. It was pure agony watching Lilah go through all of that pain and torture. I asked the PM Respiratory Therapist if they were going to do an RSV test on Lilah, and he was shocked that they hadn't done it sooner. So, at 4 am Monday morning the Respiratory Therapist put a long tube down Lilah's nose to her throat and suctioned all this junk out of her lungs. Lilah screamed and cried and tried so hard to fight them. But, we held her down and they took the junk from her lungs and tested it.

RSV negative.

So...

Chest x-ray was clear
RSV negative
Blood work normal
Stool normal

BUT...

Lilah still had a fever
Lilah was still wheezing
Lilah still had diahrrea

It was quite the conundrum.

After a VERY long night of no sleep...

The next morning, the nurse gave me all the fixings to give Lilah a bath...a sponge bath.

I don't know about you, but a shower/bath always makes me feel so great.

Lilah is like her Mama...

We were so tired, but really happy when Aaron came to the hospital with the kids.

Lilah LOVES her siblings. She smiled. Laughed. Watched and Listened.

Lilah was so glad to "feel at home."

But then..they had to go back home.

And it was just me and sweet Lilah again.

Lilah's pink eye really hurt her. She would rub and rub and RUB her eyes.

Lilah had such a hard time trying to rest.

My heart just ached for her. I hated watching her struggle so hard to breathe. Everything just took so much from her.

Thank God we are home.

Praying for REST.

Tomorrow...

We are going to Atlanta for her Ophthalmology appointment.

Praying that Lilah cooperates and feels better. She is so on edge right now that each movement makes her cry.

Hospitalization

Lilah has been in the hospital since Sunday afternoon. She had difficulty breathing, diarrhea, fever, pink eye, cough, moaning, and restless. I will update with more specifics soon.

A drawing from Alex

Aaron and I have always been honest with Alex, Sammie, and Eli about Lilah's eyes.

They ask questions, they pray for her, they support her, and they love her unconditionally.

Alex is the artist. She loves to draw. She will draw pictures that amaze me.

The other night Alex was drawing and she brought me this:

Alex is wise beyond her 7 years.

I stand amazed!

My God is an awesome God!

At the right time!

I received an email this morning:

I have sat down to write you a couple of times but couldn't find words big enough or strong enough to convey what I feel. My daughter who is four was born with bilateral Peter's Anomaly. She has been totally blind pretty much since birth. We did the surgeries, but they failed. I've been reading your blog for a few months and want to say thank you for pouring your heart out for all the world to read. You have been able to put words to the heartache, struggles, and loneliness that come along with having a child with special needs. It's almost as if you've got a personal window to my heart. I didn't have a relationship with God until I had my daughter. It's amazing how something so small and helpless as a newborn baby has so much to teach. I think He brought me to your blog. So, THANK YOU. I truly hate that we are going through this, but there is comfort knowing we're not alone. You have done so much for me. If I can help you in any way, I'd be honored to do so.

Sincerely,
K B (to protect her privacy I kept her name confidential)
Florida

***Thank you for your email, K.B. I believe that the Lord knew I needed to see these words today. For me to know that I am not alone. ***

God sure works in AMAZING ways.