Tuesday, May 31, 2011

Allergy or not

Today we met with a new doctor in Lillian's life. Dr Allergist. Super sweet woman. Liked her immensely. She spent very much time with us and did not make me feel rushed at all. Allergy testing...that was not a pleasant experience and as it turns out, a fruitless one. It is good news, of course, that she does not have allergies. They gave her 30 sticks in the back of different allergens and she reacted to none of them. I keep telling myself I am thankful. I am. Really. Although I desperately want to cry a river because it just means (to me and for her) that is just another physiological/anatomical problem that is causing her so much trouble. I know it sounds so bizarre to be hopeful that they might find something, as to me it would also mean they could give her medicine or give us steps to take to give her relief. I refuse to cry. I want to, but I won't. Lillian is so blessed and has triumphed through so much...God continues to sustain her. The new doctor did order some immunology testing that we will have done when we go see Dr. Plastics at the end of June.

Her sinus CT came back showing sinus disease. They called in an antibiotic for her.

It is still very hard for me to believe that she has no allergies, you should see the way she sneezes when we go outside sometimes. *shaking head*

Love this pic of my oldest and youngest together. Sisterly love.

Friday, May 27, 2011

Versed, check, Sedated Sinus CT, check

Up and outta here after a rough night of nonsleeping. (my 11 year old awakened with stomach pain around 330am and I went back to sleep around 530) We got there, got registered and I have to tell you I was feeling a little out of sorts. I think it's because we'd never done this before at this hospital. The registrar didn't seem to have the tiniest clue what in the world she was doing and I began to wonder if she was even registering the right child. I'm hoping she was a newbie. We then get sent to sedation services and get asked to sit in a a partially closed off closet with white ugly walls and wait. Finally, a nurse takes us to a room then on to another room. I finally asked to be told how things are going to proceed and began to feel more at ease. Thankfully, Lillian responds very well to versed so she got 5 cc's of the drug in her gtube and after a short fight, submitted to the drug. The CT took all of 3 minutes and she slept more like and hour and a half. She slept all the way home. We got home I got her out to walk about 20 minutes and she boarded the bus to school. I thought the TA was going to have a conniption when I told her she'd just had a sedated CT. She's like, "do you really think she should come to school?" I told her it'd been quite a while and she was ok with it. I did try to call and discuss it with her teacher, but she did not answer the phone.Good grief, I wouldn't have sent her if she was wobbling all over the place or anything like that. I don't know, sometimes I just don't always know what the BEST decision is. Even after being a mother for 14 years, I think that is the hardest thing, knowing and doing what is always the best. Lord knows I've not always made the right choices, but what can you do but live and learn? Hopefully we will have some results Monday. Until then.

Monday, May 23, 2011

A little follow up with Dr.Lungs

I love Dr. Lungs, seriously, I really do. It is wonderful to me to have a doctor that really seems to care an awful lot about your child. And he does. I believe it. We had a very short run of snot free life, well, sadly it has returned with our other bf vomit fest. Friday was rough, she couldn't keep a thing down and slept the afternoon away...after she cried uncontrollably FOR.EVER. I can't help but get concerned when it is so unclear to me what is wrong with her. All I can do is hold her, so that's what I do. This past week has been very strange for Lillian. She was up Wed. and Thurs. nights from about 2-6 AM and Friday was puke fest. I couldn't even get pedialyte down the poor thing. Saturday seemed to be fine, but then on Sunday and into today we have had several puking episodes. So add our other bff constipation to the list. Ok, back to subject....her lungs sound great. He wonders if there is some strange bone structure in her face that prevents her from draining properly. He says this is common with kids with pierre robin. That the bones can narrow. Sheesh. I'm not sure if this is the case...how could we know? He says he thinks this snot issue is allergy/sinus related and wants us to add claritin to the mix...( oh snap, gotta put that on the list tomorrow) . SO, another med comes on board. We have a new appointment with the allergist May 31st. I had to miss the one on the tenth as we were automobile-less. Dr Lungs has ordered a sedated CT of her sinuses, he sees lots of inflammation from just looking up her nose. I'm also growing concerned with her skinny little body again. She only weighed 26lbs and she was 3 1/4 ft tall I think. Her bones just protrude so badly, she bruises on her hips just from the bone poking through. She, of course, remains a happy little girl, going through it all with a smile. Friday we have the CT. Good good times. I don't really mind too much what she needs to have done, if it helps her feel better, that's what matters to me.

I've been holding on to this little dress for two years and she can finally wear it, she loved it.

Tuesday, May 17, 2011

*cough cough cough*

Well, I thought we got through the snot, cough, puke cycle. I thought. Lillian is once again coughing her poor little head off. The snot isn't as bad, but I think that must be what's making her cough all night long. I don't believe she got any rest last night and neither did we. She was in our bed by 3 am and by 5 we turned off her feeding bc a puke fest was coming. I can't imagine that her little ribs don't get sore. Not sure if she's picked up a little bug, or maybe it's her ears, there has been some drainage.

School will be out soon and we are planning for her to attend the ESY. She will go three days a week from 830-1130. Mornings are really not her forte, so it will be interesting to see how she does. I am usually dragging her out of bed for appointments that early. Lillian is a a sleeper. She can easily sleep 12 hours plus. Anyone else's kiddos do that? I have had concerns and shared them with the PED. but they didn't seem to think it was a big deal. I just know none of my other kids slept that much at this age.

In other news, a friend of mine had given me a bunch of hand me downs for Lillian last November, and there was a nice little stack of summer shorts...I have been tearing this house apart looking for those clothes and determined they had just gotten thrown out when we moved. I was pretty sick about it. Yesterday morning, as I was dressing, I found them, they were in a tote in my closet. WAHHOOOO. It really made my day.

We missed her appointment with the new allergist because it was the day after the car wreck. Still ahve not gotten a rescheduled date for that...*note to self, call today again* I still don't have a vehicle, but I'm hoping to get a rental today. Lillian follows up with her plastic surgeon next month...looking forward to that appointment as we hope she will get the pharygeal flap this year.

I think that is enough rambling, I must get my chickens in the roaster or no supper for the children tonight...lol.

Monday, May 9, 2011

Not Necessarily about Lillian, but it will affect her...

This is how my day went.... T-boned by a vehicle that failed to slow down at all for a stop sign.

My impact with a telephone pole...

I'm fine, shaken and bruised, Praise the Lord no serious injuries.

Biggest question...when will I have a vehicle again. Lillian's life is not to conducive to not having a vehicle. It will all work out...somehow.

Monday, May 2, 2011

The snot has left the building

Lillian's snot issue is SOOOOO much better. She still has some minor drainage and still some cough sympony at night, but praise the Lord she is better. We will be seeing an allergist next week, so we have to stop her antihistamines today. We will see how that goes.

I'm sure we will soon have to decide if Lillian will take the summer classes for school. She has really blossomed since starting school so it seems like it would make sense to continue.

That's pretty much as big an update I can come up with at this moment in time. I just really wanted to share the answered prayer of the snot letting up. Woo hoo~~ Thanks for continued prayer!