The news

Lillian had a routine visit with Dr Lungs on Thursday and it went very well.  He said it was the most clear he'd ever seen her.  I bragged about how healthy she had been.  Bring on Friday.  All day friday she was abnormally whining.  I mean crying off and on all day.  I don't think she even knew what was wrong, but it was clear by 7 last night that all was not well.  She had started the day with a little bit of gagging, but that it not totally unusual for her, so we didn't pay much attention.  Lillian can see a doctor in the morning and by the afternoon be sick with something they said looked great.  That's how she rolls.  So, 7pm,  vomiting ensued and did not and has not ceased.  I spent the nighttime hours giving slow pushes of ibuprofen, tylenol suppositories and zofran.  She was wretching and gagging with nothing even going in.  As soon as I attempted to start pedialyte, I pushed the button, she started wretching.  She begged me all through the night for drinks, which further made her wretch.  She ran a fever all night long which keeps me on a vigil because she spikes so quickly it causes her to seize.  I sat beside her mopping her with a cold wash cloth, catching her puke with towel after towel, wiping the tears being forced from her eyes.  At some point, I had that overwhelming blessed feeling that I had the privelege of wiping those tiny tears away.  It was an oddly precious moment.
At 3 pm today,  I started a 15cc/hr drip of pediatlyte which we let run for a few hours.  and she slept much of the latter hours, still wretching all the day long.  She spiked a temp again while sleeping.  I have brought her to bed and medicated her hoping she may get some rest tonight.

I have to share,late this afternoon I found myself in one pathetic pity party.  The family had been gone all day participating in activities at our church and all I could think of is that Lillian could not be a part of that...how drastically our life has changed.  How life just seemed to stop.  It brings me to tears as I remember.  Sleep deprivation and early pregnancy probably not the best combination.

So, I'll pray for healing, respite and good rest tonight.  We will spend resurrection Sunday, me and my girl, being thankful for Jesus and tears.  Happy Easter.

A Big sister

If you haven't seen it on facebook, or perhaps you don't know us personally, you may not know that Little Miss Lillian is going to be charting some new waters as a big sister.  I'm due around October 10th.  If you don't know...this will be our sixth child.  We are thrilled and Lillian is basically not real clear on what is going on.  I had an ultrasound today and she has giddily carried the pictures around showing them to Daddy.  We keep telling her the baby is in my belly, but she doesn't quite get it.  I'm hoping as my body changes she will have a better understanding.  She does LOVE babies, so I'm hopeful that the transition will be pretty good.  She flip flops back and forth about whether she'd like a boy or girl.  Today happens to be boy.  LOL.  So that is the news here.  She is doing very well, sickness is being held back by meds though she routinely has green drainage.  I have been able to pull her off her albuterol which thrills me.  She has missed school this week due to bad weather here.  School was actually cancelled for all students here today.  The kids were thrilled, but it cuts into our slightly extended spring break.  I am so looking forward to nicer weather.  I'm ready to get us back to church and large functions that we have avoided with Miss Lillian, you know though, the sacrifice is nothing in comparison to having her health be so much better.  PRaise the Lord. 

Changes

Lillian is doing pretty well.  Still trying to keep her out of large crowds.  Her school PT visited her last week in the classroom and was so pleased with how well she is doing.  It tickles me to death to hear such positive feedback. 

Her ST has been cut to once a week due to insurance issues.  This is something I will be appealing. 

She is doing multiple breathing treatments a day plus her vest treatment.  I am so looking forward to warmer weather so we can get back to a little more normal life.  I heard the weather is supposed to turn ick again this week. 

Bring on spring!

Tonight's events got me to thinking

We were honored to attend the Pregnancy Care Center's yearly banquet/fundraiser.  What an amazing organization.  It made me think about life.  LIFE.  It made me remember each of my precious blessings.  It especially made me consider that day...it was the day after we'd been given all the information about our precious Lillian.  All of the doomsday reports of her poor health and unlikely survival. Hearing all that distressing prognosis left us spinning.  When the doctor said she would be categorized as moderately to severely mentally retarded, I don't think it hit me quite like when he said she would likely not survive and we should tell our other children immediately.  It was so much more than I could comprehend.  The next day as he came by her bedside and asked me if we were still all set with the "plan" to move ahead with a trach, I remember saying, yes of course...IF they were sure that what we really needed for her.  He stopped and said, well....there is one option we didn't discuss.  I remember looking at him quizzically, wondering what other option there might be. His next response , well, we could do nothing at all.  That would have been a death sentence for our angel.  I immediately shook my head.  No way. Our daughter was not hopeless, she had a chance at living and we would choose that for her.  It is a strange thing to think I could have made the choice to turn off my daughter's life support and let her go. 

So thankful God continues to sustain her life and bring us joy and love each and every day. 

Remember that hat?

The one the lady in the pulmo office said she would make Lillian?  It came today...Isn't it just adorable?? Such a sweet thing for that woman to do. 

Lillian has been doing pretty well over all.  I believe the key was the antibiotics.  I gave it all month last month as regular dosing because she was getting sick.  Her PT and teacher both were sick this week so she missed those things, but we are making up PT tomorrow.  Our initial appeal for her ST was denied, so now I will appeal and have to go to court and plead my case for a judge. 

Charlotte's Web and a Crazy Mom

Lillian is recently loving Charlotte's Web.  We are watching it every night before bed.  It cracks me up when she giggles in the same places every time.  Like when Charlotte is telling Wilbur she doesn't eat the bugs she sucks their blood and Wilbur says yuck.  She cackles every time.  I was thinking two nights ago that I may have seen it a few too many times as I was starting to think things like, gee, Wilbur's kind of a whiner....and how did he learn the word objectionable just after he learned to speak.  (maybe a few too many viewings you think?)  She always has me fast forward through the slow song when he's sad about being killed.  Then, I got to thinking what a positive message there is in it for her in particular.  You know the part when the runt gosling is born and Wilbur breaks into the song, "we've got lots in common where it really counts" the song talks about the unimportant ways they are different, like the runt gosling as webbed feet and wilbur has hooves, but they both use them to move about.  I kept thinking what a positive message this is to my sweet little angel.  So, even though I can now almost recite the entire movie by heart, lol...I will watch it with her as long as she likes.

She is struggling  with her ears oozing which is causing her to cough.  I've also found that if she is off her pulmicort more than one day she is coughing badly with activity and just in general.  Dang asthma. We are scheduled for follow up with ENT in Feb.
 Did I report that I got  the IV gentamycin approved to get from our regular pharmacy? Of course, I had to make several phone calls and even after the PA letter came I had to call them and get it set straight. Woo hoo.  Course, I get one thing settled and another issue takes it's place.  Insurance has basically denied her speech therapy.  They will only approve 7 visits.  Time for appeals.  If I have to appeal it, it actually goes before a judge.  Kind of crazy, the letter even says I can get legal aid if need be.  Good grief.  I'm just praying for favor and that our therapist who has already asked for an administrative review will get what we are asking for.  Stressful.  We should have an answer in 7 days on the adm.  review if I understand the paperwork correctly. 

School is going well for her.  She has a lot of trouble with attention span and her OT at rehab is starting to make reference that we may need to dig into that deeper.  Not sure what that means, but it makes me feel edgy.

My darling girl has dozed off and it's time for me to head to bed.  Good timing as I will not have to hold back my tears as Wilbur is at the fair now and.. well... if you've seen the movie you know that Charlotte is saying goodbye soon.  *sniffles*

Tense day

Today we met with a CVS to resolve our "dispute".  I guess I'm no longer at liberty to discuss details, but if you read on back you can find out what I'm talking about.  I had so much trouble falling asleep last night as I considered the choices I've made in regards to the situation. 

First of all, I'm angry with myself.  I know it's not my fault. BUT, I work really hard to manage her illnesses at home.  As a parent of a medically fragile, special needs child, I weigh all the pros and cons of taking her to a doctor or a hospital. In hindsight, I think I'm not always picking the lesser of two evils. 

Secondly, I'm glad it's resolved, but it doesn't stop my heart from feeling the pain of the difficulties she faces because of the negligence of the very institutions we depend on to help care for her.  It is so unfair to her.  It breaks my heart to be helpless. 

Tonight, I brought her back to her own bed to get her back to sleeping here.  I look for it to be a long sleepless night as she will likely wake up in a few hours and want me.  Oddly, in my bed she sleeps all night, so I'm not sure what wakes her in the room she slept in for a year and a half with no problems. 
She is battling snot in a major way and she even started wheezing tonight...which you KNOW it not a good thing.  I hate wheezing, have I ever said that before?