Take a Walk with Me

Just when you think you know what you know...

2012-02-17T14:59:00.000-05:00

Took Lillian to the ped today because there was some granulation/inflammation around her gtube site. Turns out, it's not that AT ALL. It is, in fact, a staph infection. Good times. Hopefully, our prescription cream will work wonders and clear that all up. We are also going back on a round of levoquin due to sinus problems. She has battled this all winter and there seems to be no reprieve. She is sleeping poorly due to all the drainage. We are back up to using albuterol, nasal washes, and nasonex as well. She remains happy for the most part. We had a very public and nasty vomit episode thanks to the gobs of mucous she is swallowing...so not pleasant for her. Just kept coming like a volcanoe. I happen to have left my diaper bag in the car...and when I did get it, found I had no diapers or burp rags in said bag....sheesh, when will a Mom learn?? She is almost back up to her therapy routine, but someone--ahem-- who is not back in the habit of our times, forgot Thursday so we missed PT. WHOOPS.

Just a little quickie update on Miss Lillian.

This morning

2012-02-15T14:35:00.000-05:00

I woke up pretty early. I heard you coughing from your room, but knew you were still asleep. I checked on you and stayed in my room so I would hear you when you woke. Several hours passed and I thought you should be waking up anytime. Then it hit me. I was almost afraid to look. There are times (few and far between, but times nonetheless) that I am gripped in the fear that I will find you not breathing in the mornings. Particularly when you sleep so long. It takes me but a few minutes to shake it off and tell myself how ridiculous I am. But really, your life has taught me better than anyone else, how quickly life can change. In a moment you are living life and the next you could be turned upside down, in joy or sorrow. I don't experience these emotions with just you. It hits me at times with your sisters or even Daddy. I think, in some way, I'm just trying to be prepared for something bad to happen. Isn't that awful? I look back over the last five years and try to gauge if you have gotten worse or getting better. It's strange. In some ways yes, in some ways no. You don't seem to have the lung infections that you used to. You are, however, chronically ill in other ways. Constant ear infections, chronic sinus disease...and this last year has just been hard in general for you and sickness. You have not had any reprieve from much of anything. I love your strength. You just keep going. You have to be really down to let it get to you. Lord, I long for these days to be fewer and fewer. I love you my girl. Thank you for the light you bring to my heart.

Things I love about YOU!

2012-02-09T17:57:00.002-05:00

1. Your hair. It's getting so long. You are looking like such a big girl now.
2. The way you carry around your bags of "littles" (bunch of little toys,as I like to call them)
3. Your resilience. You never stop. Even when you're sick you handle it so much better than me.
4.   Your smile. You always have a smile for me and almost anyone else.
5.   Your loving heart. You love everyone. It's impossible to be with you and not feel love.
6.   Your decisiveness. You stick your finger in your mouth and make a gagging sound when you don't like something.
7.    Your singing. Daddy calls you his little songbird, because now you "sing" all the time.
8.   Your run. I am filled with joy when you run.
9. Your belly laugh. Who can resist belly laughs?
10. Your helpful nature. You like to do chores and put away groceries. Even if they are too big for you to handle.

"the fitted foot"

2012-01-30T23:34:00.000-05:00

Lillian had her appointment with the fitted foot clinic here in our little town (i'm amazed, at times, by what is in this town and what isn't) First off, I found out she's in shoes that are too small. She approved of the type of shoes (which I just got at target for 5 bucks). just not the size of them. I have to tell you, I was pretty shocked. I also have to say, I have a massive bad sinus infection and it was hard to talk and focus on what was going on. Bottom line, she needs some orthotics to help with her flat, rocker bottom feet. Her ankles are turning in a bit and she's tight in her hips in one direction. I am waiting to hear back from them about what are insurance will cover. We go from there.
She also resumed her therapy today. I dropped her off and was back home a mile away to rest my throbbing head. When I went back to get her, these two women came in with Bentley, the St. Bernard therapy dog. He was pretty and GIGANTIC. Seeing as Lillian is terrified of just about every critter that is bigger than our little dog, I quickly let the staff know that she would totally wig out if they took the dog anywhere near her. A while back a had a discussion with another SN mother and she had asked me if Lillian had any fears. At the time, I couldn't think of any, but I'd have to say she is pretty terrified of animals. I thought this was something she would outgrow, but it doesn't seem to be the case. Which honestly, I'm not too concerned about. I mean, really, with all that she has going on...fear of animals is not on my top ten concerns list. So, they take this bohemeth of a dog back and this lady sitting across from me begins to question me about Lillian's fear of the dog. She went on, in great detail, of sharing with me how I could make Lillian overcome this fear. I should find someone with a puppy and set a time and place and subject Lillian to the animal on a regular basis . That way she could see the dog grow progressively. Hello. Thanks for your input total complete stranger who knows nothing about my child or her life or the life that we juggle with her. I really don't care that she's afraid of animals and if she decides to become a vet someday I guess we'll cross that bridge when we get to it. WOW, snarky much? Of course, before I have a moment even to clear my pounding stuffy head, the therapist comes out with Lillian and we head on home. I'm sure she meant well. It didn't bother me at the time, but it kinda rubs me wrong right now. Get ready for some more transparency, friends. This may be the first time I've ever REALLY felt this way about other people. Typically, I don't mind sharing Lillian's life and her story with strangers. I don't care if people are staring at us or wondering about her. I don't care when people find out her real age and get that look they get that tells me they know something is different. Today, this woman hadn't even seen Lillian. And what possesses folks just to blurt out their "fixes" to what they perceive as a "terrible" problem for you?? In this walk, I have learned that there are things that I just have to be OK with. The world is not coming to an end if she doesn't like animals. I am not a perfect person and here's a good example of my ugly, I guess you'd say.

PS- if you read "Perspective" you'll understand this. I bought some chux. No more meltdowns over wet beds. :) Girl's gotta do what a girls' gotta do not to have unreasonable breakdowns!

Perspective

2012-01-25T12:03:00.002-05:00

You want transparency? Last night Lillian's nonstop coughing woke me up and after seeing that it was not going to subside, I went down and got her nebulizer and started a treatment. At about 2 AM I went back to sleep. I went down this morning to get a fresh diaper and another albuterol to arrive back to her having peed through her diaper all over MY bed. I just had a melt down. All the while feeling so discouraged. It's been one week and she's sick. Again, sneezing out massive amounts of snot. As I wept, I kept telling myself that I was being irrational. I prayed or at least tried to assimilate some form of prayer in my mind to drown out my discouragement. I had my moment, got the treatments going, diaper changed and feeding started so that our day could continue as it "normally" would. I sit down to check facebook and blogs, where God reminded me to be grateful, to know He is there, catching those tears. That while things are not optimal now, we are NOT in a hospital, our bills are paid this month, and it could be much worse.

Five years "and change"

2012-01-23T23:03:00.004-05:00

Today we had Lillian's well visit with her pediatrician. HA!! Typing that sounds funny to me. "well visit"

We found out
1. She's in the 0 percentile...(also funny)
2. She does have her own little curve...lots of dips, but a curve none the less
3. She is probably going to get shoe orthotics bc of her flat feet and ankles turning in
4. This child has NO, I mean NO fat on her little tiny body. (wish I could donate to that)
5. We did not get vaccines because she is getting sick again
6. We are starting her prophylaxis antibiotic a week early in regards to #5
7. She did not approve of the Dr checking a concern I had in the diaper area.
8. She weighed 29lbs once before on her 4 year well child visit.
9. We may need to start the pulse ox again at night.
10. Dr will order a pre surgery care plan meeting before any further surgeries.

She resumed speech today as well and will have OT and ST again on Thursday and we'll be back to all three next week. She did a great job with her ST today. She can blow a recorder now. Amazing. We have an appointment next Monday for a foot clinic here in town.

I cannot wait until she is talking and can tell me who all her angels are that she talks and plays with. It is so interesting to see her play with her invisible people. Here's the thing...none of my kids had an imaginary play mate....and how would Lillian even know such a thing existed? When she was around 12-18 months old I would catch her motioning and mouthing to things above her crib.

She is a light, my friends. I continue to bathe in the joy of seeing her do new things and realizing what a blessing she's brought to my life. It's not always easy, and I struggle all along the way, but I try never to lose sight of the incredible blessing she is.

One week ago

2012-01-16T00:42:00.001-05:00

Actually one week one day ago, I spent most the night time hours up with Lillian. She coughed and coughed and coughed and coughed and..well, you get the drift. Anyway, by Sunday afternoon one of her ears was bleeding. We cleaned out a good little amount of blood and I thought, ok we start drops. So I did. 4 am Monday morning she wakes with eyes glued shut. Also repeat of previous nights' cough fest. (and you all know by now, her cycle...cough cough cough, puke puke puke, repeat) By Monday late morning her eyes look absolutely terrible, she looked terrible, she felt terrible. By Monday night, both ears are draining nasty junk and our ped has called in drop for pink eye. Tuesday night cough fest continues to the point of me adding albuterol nebs back to our regimen. (thank you JESUS for albuterol) I think by Wednesday I started her on Levoquin and 24 hours later she is showing marked improvement. I mean not all better, but definitely improved. Nights still being the worst of it all. Momma not sleeping because Lillian's drainage causing so much cough. By Tuesday I was in shut down mode. I was SOOOO tired. Too many nights in a row of up and down up and down. or just plain up all night. Wednesday I was in drone mode. Friday she went back to school. I had to cancel her therapy last Monday, that is supposed to happen tomorrow. I had to go to the dr myself Friday for BP meds, is it any surprise that my BP was too high??? ugh. Lillian is sleeping much better. I've been able to drop the albuterol as of Saturday and tonight I hope to sleep a normal night. Crossing fingers!!

In the beginning...

2012-01-10T14:51:00.001-05:00

Lillian was born not able to breathe. She was blue from head to toe. They would bag her (resusitate with an ambu bag) and she would turn all pink. As soon as they stopped bagging, she would turn all blue again. This went on for several cycles. The chaos shifted in to high gear as all the professionals in the room started looking stressed. You can tell there is something worse. Moments I'll ever forget. I knew something MORE was going on when the doctor left sewing me up to tend to her. She spent the first two months of her life trying to breathe. I never really thought about breathing being hard. Until then. Five years later...with diagnosis such as chronic lung disease, asthma, trachial malacia, words like sats, breathing treatments, retractions, wheezing....is it not a wonder that I become a little stressed when she is sick. There is no routine or lesser illness in Lillian's case. EVERYTHING seems to attack her ability to maintain "normal" functions. Eating (via gtube) and breathing. Routine is a word that just cannot be used in conjunction with her. These last two surgeries took us down the road of breathing issues yet again. It is stressful when there is a cough that is constant and eventually leads to vomiting. There isn't a whole lot of room for breathing in between. Add in any "minor" infection and it all affects the ability to breathe.

breathe [ bree ] take in air: to repeatedly and alternately take in and blow out air in order to stay alive

Sounds easy doesn't it?

Last night

2012-01-08T12:20:00.003-05:00

I was up til two listening to a constant cough and rearranging a little sleeping girl. I woke at five to her gagging and wretching. I woke at seven to her waking me up. She coughed ALL night long. She woke this AM puking up most of her feeding and sneezing snot out her nose. I'm feeling kinda rough. She seems to be acting better now that she's awake awake. Snot prevails though...LOTS of snot.

Random

2012-01-05T12:32:00.000-05:00

Glasses...will this girl EVER learn to wear them?? We had her pretty good in them until we had surgeries . Now, we have had to start ALL over trying to get her to keep them on. We have lost them more times than I can count. You would think I would not stress over it, but I do....just when they are lost of course. *sighs*
Surgery updates...her feedings are up to normal and she went back to school yesterday. Good news, she is babbling like a baby learning to talk. Gives me lots of hope. Makes me smile big time!! I can't decide if I think her swallow has improved yet. I'm sure she's still healing.
Therapy...we have appts for reevaluations on Monday. I dread getting into that rigamarole again. AND they of course do not have our same time slots open.Big shocker. Now that's going to be all different. If we didn't have to work around feeding schedules and and school...bleck. I hung up the phone feeling all annoyed because its like I have to fight for them to work with her for an hour. I say again...how is that when she was an INFANT, they pushed her for an hour and now it just seems like they don't know how to engage her for an hour. Me? I just need to be able to understand that before I am ok with them cutting her therapy time.
Sinus Infection? Yep, I'm betting. Green globs coming out her nose and drainage like crazy at night, toss in some nighttime barfing along side.
Potty training....ugh...I think we are still a ways off on that.
Happy...she is so happy. Which makes her Momma happy.

"talking"

2011-12-29T22:58:00.003-05:00

Lillian's breathing at night does seem to be improving. She is just having some light snoring mostly related to what position she's in.

She is singing A LOT and making ALL kinds of new vocalizations. It is like having a baby in the house. Very much like the babbling noises a baby makes when learning to talk. We get a lot of short, fast phrases that make sense too, but we really have to be paying attention. She is still sleeping quite a bit too. I think she goes back to her bed tonight, as I feel like I no longer need to be at an arms reach. We were able to advance her feedings to normal as of today, so I hope that continues. She will follow up soon with Dr Plastics and she's supposed to have her very first dentist appointment Monday. I think the dental appointment, having been made so long ago, will likely be rescheduled. Not sure I want a dentist poking around her mouth at this very moment in time. I also think we may have to do some more training to get past the recent trauma of the surgery. Not to keen on wanting someone in her mouth, can't say as I blame her.

Thank you for continued prayer. I know that is what continues to get us through!

Not AS bad

2011-12-27T00:20:00.002-05:00

Lillian's nighttime breathing seems to be getting better, she kind of fluctuates from really hard, sucking breaths, to normal sort of snoring. I feel like I'm awake every hour because she is so restless or needs readjusted if for no other reason than to just induce a cough to clear some drainage. It is my prayer that the inflammation is still there but improving each day. (I just rearranged her and she sounds awful....crikey) She tires easily and we find her just sitting quietly from time to time. She SO enjoyed opening gifts this year. She hears the word present and she gets super excited. She raises her hand and waves and vocalizes me me me. When we went to Grandma's she even asked her Daddy to open his presents and he let her of course. She loved doing it even knowing it wasn't going to be something for her. I think her favorite gift may have been the "hair styling" accessories and her new mini chuck trucks. Friends, she LOVES those little chuck trucks. That being said, she has greatly enjoyed blow-drying our hair, her hair, her bald babies' hair....and anyone who will let her "dry" their hair.
A friend of ours from church gave us some clothes for her and this vest she's wearing was in it along with lots of other adorable items and she just LOVES the vests. Cracks me up.

I still feel like I'm trying to get back to a normal functioning schedule...HA..now is that a funny sentence or what? Going to try to enjoy these days off with the kids home from school and treasure our moments together.

Five Years Ago

2011-12-24T19:26:00.001-05:00

I left you laying in the NICU so I could be home to celebrate Christmas with your sisters. I left you there, healing...and today I sit beside you as you sleep, praying for more healing. I know it is impossible to go back and even more impossible to undo decisions we've made. All I can do, is hope that we made wise, informed ones that are for your very best. It's hard to see you struggle to breathe, as that is how you came into this world... My hope, every day, is that you will not recall these difficult times and you'll only be filled with memories of the love everyone has for you. Merry Christmas precious girl, Mommy loves you so much.

Home

2011-12-23T14:49:00.000-05:00

It was a yuck drive home in nasty rain, but it was so worth it. The doctor showed up in Lillian's room last night around 6pm. He said we could stay or go home, and I said we are out of here. I honestly can't believe some of the crap that happens when we end up in the hospital.

Everyone went to bed last night and I felt so weepy, I told Matt that I knew I should just let it go, but its so hard to know what your child needs and have to try to convince the medical people that I am right. Makes me feel like I cannot care for her properly.

I'm not sure I will consent to or hope for anymore surgery for any good long while to come. No matter how necessary we think it might be. I pray she remains healthy and out of the hospital. I honestly start to wonder if I can really keep sane, seriously. This is the hardest situation I've walked through in my life. It is the WORST feeling to be so helpless. The only comfort is resting in the Lord and remember He has it all even though I don't understand it.

To you ALL, family, friends and prayer warriors I don't even know, I can't even express my gratitude for you prayers, your thoughts and your supportive comments. The angels who arrive at the door with a meal for my family...friends who will help out with the kids so Matt can go to work..you just can't imagine how much it means. Thank you so much.

Lillian had a rough patch through the night, but slept and was better once some pain medicine kicked in. Her breathing sounds terrible while she sleeps, but it seemed less labored later in the morning. I hope that means the inflammation is going down.She is playing around the house and I'm being a big old bump on a log. Think I'll take nap maybe. My mind wants to make cookies but my body is still trying to recoup from 48 hours of mostly awake time. It's amazing what your body can do.

We are already hearing lots of new vocalizations from Lillian and gives me great hope for her communication abilities, I can't hardly wait for her to start back to therapy. I've also noticed she's been able to take drinks without getting choked at all. Amazing. Now, if I could just make the kids understand it wasn't like magic and she will still need to learn how to use the new mechanism in her mouth. :)

Day 3

2011-12-22T12:43:00.000-05:00

Lillian is continuing to have problems with secretions, fever, and vomiting. If we could control her fever, I think she would be so much more comfortable, but keeping it in her gut is an issue. So we called the surgeon to see if he would order a suppository and instead he wants her to be seen by a medicine dr. SO- I am waiting for that doctor to show up. Apparently he is tired of managing her care. I am exhausted and getting fed up. She is laying here miserable. Part of me just wants to get the discharge papers and head home. Totally fed up.

Pharyngeal Flap 24hours later-

2011-12-21T17:36:00.000-05:00

Notice she has her little leg crossed...

Lillian has been sleeping for a couple hours, since her three oclock feeding and dose of T3. Interestingly enough, she seems to be mumbling and gesturing in her sleep a bit. Her stats are hanging in the mid-high 80's low 90's, especially while she's sleeping.
Todays points of interest:

1. No puking as of 10am.
2. Still having fevers
3. Still needs O2
4. Her eyes look a bit more normal now.
5. She has smiled on request twice
6. My chair broke as I sat down to read to her and I twisted my back, took the fall on my elbow, and lost my dignity for the rest of the day.
7. Former patient families stopped by with very generous gift bag and slice of some tasty pizza (she has yet to waken to see gift)
8. Hoofed it over to Norton Cafeteria, as there is only a Mcdonalds in Kosair....Guess what? They have fountain MT DEW!!! WAHOOOO...
9. Got a 45 minute nap at 3....double wahooo!
10. Realizing my positive "we are coming home next day" attitude, should have packed a hair dryer and bathroom needs beyond my toothbrush.

I am really hoping she perks up tomorrow or even tonight. She cries when I move her.

Bethany is attending her first winter formal tonight and Matt has arranged for the girls to stay with someone tonight so he can go to work tomorrow. Isabelle is balking not to go. Nothing like having your heart torn between two places.

My view

2011-12-21T10:46:00.001-05:00

Her facial swelling is down some. So far, she got a dose of T3 at 10. Hoping that will stay down and give her some relief. Her breathing sounds terrible, although it's not her lungs, it just the drainage and change in what they've done to her palate. Her night was brutal. I think I slept maybe 3 broken hours? I don't know. At 430 I hit the wall. I kept thinking what a nice night we had before all this. She just didn't look normal in the eyes AT ALL until just a little while ago. I found myself not knowing what the best thing to do would be. Her nurse last night was great. She got Lillian as her patient at 11. I told her I bet she was glad to have gotten sick patient and unstable parent duo. She just patted me on the back and tried to give me some comfort. She spent most of the early night hours dropping sats down into the 70's. They tried blow/by oxygen and that didn't help so they put her on nasal cannula about 2. Her cough is so yucky. This has been the culprit of the nighttime vomit volcanoes. Today, notsomuch. She is just puking because there is so much blood in her gut. The Dr said the surgery itself went well..as planned but he knew her enough to remember it would not be an easy recovery, which unfortunately is proving to be true. She took a couple sips of sprite after the last pukefest and has been in and out of a doped up sleep. She is breaking into sweat cyclically, routinely drenching her hair and pillow. I can't remember the last time I was so troubled by the sound of her labored breathing. At least we KNOW it's not a lung issue.

On the upside, the pleather cave window bed is not terribly cold as long as I get the blanket all around me. Although, I almost kilt myself jumping up to get to her when my feet got tangled in said blanket.

Out of surgery

2011-12-20T17:24:00.001-05:00

Well, friends, she's out and it's not pretty. She is miserable looking and acting. Her face is swollen greatly and she is vomiting lots of bloody mucous. They just gave her some zofran iv. She is needing to sleep, but keeps fighting to stay awake.

TRUST--&--PEACE

2011-12-19T12:50:00.001-05:00

I was a speaker for a church Christmas ornament exchange a couple weeks ago. I was able to share a little of my testimony of faith as it has unfolded over the last several years, altered greatly by Lillian's birth. After I spoke, I really examined my heart and realized I was was probably wussing out a little when it comes to situations where I feel so out of control. I DO believe God is in control and He's got it all. I'm trying to learn how to NOT be anxious or fearful when it comes to surgery and everything else that pertains to Lillian's health.

Her pump sounded the end of her feeding and it triggered the thought in my mind, "YAY a whole feeding in with no problems" quickly followed by..."wow, it will take another month, after tomorrow, to get back to this point...again"

I have not allowed myself to build up anxiety, I've really tried not to focus on tomorrow's events at all. I'm trying not to have expectations about what it may or may not do for her future.

I've been feeling a bit jittery, edgy even.

So, if you would, say a prayer, for her, for my family, for me. Will update as I can post op.

Nostalgia

2011-12-17T20:41:00.000-05:00

WOW!! What a day....let me back up by saying I have gotten very poor sleep the last two nights, I could go into detail, but suffice to say I've not slept well. I had a lunch date with a long time friend today and my Mom graciously kept 4 of the 5 girls (oldest at a friends) so that I could have lunch with my friend. We sat and caught up for roughly 2 1/2 hours. It was wonderful. We get to see each other so rarely and it was great just to catch up. I knew she had a Christmas surprise for me, but was overwhelmed to discover her church/church's daycare had put our family on their Christmas tree and she filled up the back of my van with gifts. There really are no words to describe how blessed we are to receive such a generous gift. It is the true feeling of humility and grace. NOW, my girls will have more than three packages under the tree this year.( I know Christmas is not about gifts...and they know that...but it is still difficult to not be able to give them as much as I would like to. ) We have been very blessed to be on the receiving end of being supported for Christmas ever since Lillian entered our lives and there are really no words to describe the grattitude I have. So, we had a nice lunch and a fun surprise, a few tears and I headed back to get my kids. I enter my Mom's house, to find Lillian sprawled out on a blanket in front of the tv. I almost wept. Before my parent's divorced, anytime the kids stayed with them we would always find them laid out like that. Just the familiarity of the scene tugged my heart strings. Added bonus, to see Lillian in that way was extra cool. After leaving Mom's, we headed to my SIL's house because she had a little Christmas gift for the girls and our family. We got there and each girl got a small popcorn box full of microwave popcorn, a box of candy, a night shirt, and hot chocolate packages. She then presented me with a big bowl of popcorn packs, cocoa, jars and dishes of Matt's all time favorite homemade goodies she makes..a huge pumpkin roll, old fashioned potato candy, fudge, apple butter, AND a DVD collection of old Christmas movies and cartoons. Today felt like I'd been jolted back in time to when things were not quite so complicated...you know what I mean? I am physically tired today, but emotionally filled with so much love and comfort. Great great day. Just seeing all those people in one days time would have been enough!

Lillian's surgery is scheduled for 2:00, Tuesday afternoon. We'll be there at 12:30. Thank you for continued prayer!

Queen Lillian

2011-12-16T11:24:00.003-05:00

I am whooped or wrapped or whatever you want to call it. Almost everyday, I bring down this back rest pillow for Lillian at her request. Today she requested her blanket too. Sheesh. I get her all set up on the couch. Go sit in the dining room. Five seconds later....

Her highness "requests" moving over to the loveseat. To lessen the chances of a pulled out gtube, I go and mover her to her other couch throne. I am a sucker. I think. Look at that grin. All in a day as the Queen's subject.

INsource

2011-12-16T08:56:00.000-05:00

Last night I attended our local Special Needs Support Group. This is only the second time I've been and there was a rep from INsource there discussing our rights in the education process for our special needs children. Most of what she talked about just further confused me.

Here's my initial thought process....I have this child of mine, who happens to have all these special needs. I guess, I expect to learn as I go because I've never been in this situation before. I know what I've been told by the people who have been working in this situation for way longer than I've been a participant in it. Know what I mean?

I guess the short version of last night is...we have rights. INsource is a resource to help us make sure we are not getting steamrolled. I did find out a few interesting tidbits, which tells me I NEED to read a huge document known as Article 7 and get to know it well.

Other really interesting tidbit...Lillian is now being taught to communicate with ASL. When we started working on communication in therapy, it was decided that Lillian would probably speak, so we should just try using signed English. We bought a book and on we trod. Well, here we are 4 years later, her ST doesn't think an Ipad is a good choice right now and they are teaching her ASL. Guess what? We don't know ASL. HELLO. WELL, according to INsource...the law states that our public school..ie the state is responsible for training us. So, if they are using ASL as a means of teaching her to communicate...then they have to also provide training for us. I just have to make a request in writing to the powers that be. AND, if they deny our request then INsource will step in and advocate for us because all these issues are laws...people...laws.

Now, back to my beginning point...I had NO idea this was possible. I've often wondered about issues such as these, but didn't really know where to turn.

I also made a new Warrior Mama friend. That was a nice bonus too.

We like shoes, you like shoes?

2011-12-14T16:02:00.001-05:00

Are these things cute or what?

Look at his little happy face!

Modeling her shoes!! Almost too ashamed to post this picture bc of the mess in the background. I guess if you didn't notice it before I've pointed it out now.HA! I had to take this pic five times to get her to stand still. LOL
She brought all these home today from school with a letter saying a local business donated them. Can't imagine how many they had since Lillian got three pair. Pretty cool! Course, it probably helps that she has teeny tiny feet. :) What a nice blessing for us!!

Goofy Goober YEAH!!

2011-12-06T15:17:00.001-05:00

If you read this, then you will totally understand these pics. If you didn't read this, it won't matter too much, just give you understanding...enjoy!

Laughing even...what a nut!

Dr Lungs update

2011-12-05T19:23:00.001-05:00

Poor little girl don't have no toys....

She has to play with her formula boxes...

Even makes a sidewalk...pretty cute with her baby, right? She's a queen on her throne! Ha!

I took these pictures over the summer and thought I'd lost them, but turns out they were just not saved to my SD card. Hello.
Dr Lungs wants us to do percussion twice a day. Not only twice a day for fifteen minutes but with her lying down head on a decline. Should be interesting. No? He put her on Bactrim once a month for prophylaxis during the winter months. We are also going to take a course of levoquin starting tomorrow because my pharmacy doesn't have a drive in and it is N-A-S-T-Y outside today. Raining, cold, and WINDY. The drive down there and back was intense. Just trying to keep my vehicle on the road from the gusts and not hydroplaning was a trip. Had a big old headache by the time we got there. Thank the Lord for keeping us safe. There was quite a wreck on the south bound side when I was northbound. UGH. God bless my neighbor who got Madeline off the bus, let me park in her driveway because mine is flooded ankle deep all the way across, and also gave me two cans of kidney beans for dinner so I didn't have to go schlep back out in the nasty weather.

Tried to take a bath a bit ago and nothing will bring you out of a tub quicker than the sound of a sickening thud thud thud and oldest child screaming out "OH NO OH NO" 10 years off my life...seriously. Lillian took a tumble down the basement stairs where Bethany saved her from hitting the concrete...but 6 steps tumbling nonetheless. What a day.

Irony

2011-12-05T10:11:00.001-05:00

It's a funny thing. When I was pregnant with Lillian, before I was put on bedrest, I babysat in my home. The people's kids I watched gave us a playpen, high chair, and johnny jumper. How funny is it that five plus years later Lillian is playing in the playpen. ( The oldest usually keeps it down in her room for her dolls. ) We had some family in last night and we set up the playpen in the living room because they have a baby we thought might need it. Today, all I have done is watch Lillian pile items into the playpen, then point to me and then into the playpen, indicating that I'm supposed to put her in. Same thing when she wants out, first she throws everything out and then motions for me to put her in. Was never able to put her in a playpen as an infant and now she's in hog heaven playing in it. Hilarious.

Friday we had a follow up with ENT. She thought she looked great...although her entire face was swollen that day. Today we have a follow up appointmet with Dr Lungs. I dreamt all night last night that I was lost and couldn't find my way to the office and I kept walking around in circles in a hospital and noone could tell me the right place to go. Needless to say, I didn't sleep well at all last night and Lillian woke up at 5:27 when her pump starting beeping and I didn't hear it right away. I dread that drive down there today, I'm tired and its perfect sleeping weather here in IN. Raining and overcast. Lillian will likely sleep and then be up super late tonight. Oh well. Hopefully we will have a safe drive and the back ups will not be so bad. They have a major bridge crossing closed down that way, so I usually sit in 20 minutes of back up.

Tonsils out....S/P two weeks one day

2011-11-30T22:38:00.001-05:00

Lillian continues to struggle with keeping her tube feedings down, particularly her first feed of the day. She is coughing quite a bit at night and I can hear the drainage just sort of stuck in her throat. She has spent the last 15 minutes holding her nose and blowing so hard I can hear it coming out her ear tubes. She is having quite a bit of trouble swallowing ANY type of solid. Most of the time she winds up gagging or getting so choked I start thinking she'll need the heimlich. She seems to be doing ok with liquids. I am keeping her out of big crowds trying to avoid areas with tons of germs floating around. Her therapists and I thought it best to stop therapy for this period of surgery time and since it falls around holidays, it's not like she's missing all that much anyway.

One would assume that after five years I would be accustomed to all this surgery stuff and especially all the illness she deals with so regularly. Unfortunately, I don't think I am. Does anyone else feel that way? Holla back. I think it's partly because I WANT her to be well so bad and not have to struggle so much. I don't know.

I struggle at this time of year. It's not something that stays with me ALL the time...I think it is just the anniversary of when life changed so dramatically. Changes that  have been so incredibly stressful...but also indescribably blessed.

I still can't really wrap my brain around the fact that in less than a month I will be handing her over to a surgeon, yet again, and the nerves and the tears and the hopes all mount up. It becomes so emotionally taxing to put her through each thing. I actually made it out of the OR this last time before the tears fell. Then, I sat in the waiting room, staring out the window crying quietly...wondering to myelf why do I cry....and it hits me that I'm weary, so weary of putting her through it. She is so aware of what is happening now, it's harder and harder. She knows where we are and what is coming and she fights the medication they give her for calmness. Even as I type, scripture fills my mind about not worrying about tomorrow...God is already there.   I know. I know. It's my faith in knowing that very fact that gets me through every day. If you wonder how I do it...that's how. Not in my own strength.

Thank you Jesus for another day. Another day with my Lillian and each of my girls. I know your hand is on us and all that is to come. Bring me Your peace. In Your Name

My Lucky Number

2011-11-25T20:20:00.001-05:00

Five has always been my "lucky" number. Not sure why, but it has. Ironically, I have five children. All girls. All of which have changed me and made me who I am today. Specifically, my fifth daughter has probably made the most impact in my relationship with the Lord. I have been a believer since I was five years old. (funny, hadn't realized that significant five until just now) the same age my sweet girl is as of yesterday. We had a little party today. Smaller than originally planned because of her recent surgery and her upcoming one. I had visions of her little school mates and LOTS of friends who have traveled along this journey with Lillian. But, as time got closer and the surgery had its kinks and I started thinking of the germ factor....the party became a small gathering of some grown up friends and family. Mere words cannot express my joy in today's activities. Even as I stood making snack foods for the "party" I was struck by how blessed I was to be making them for the very event we were celebrating. I find myself thankful in even the most mundane tasks simply because I'm so aware of the gift of her presence. I'm so thankful for each year....each moment of her life and the life I have with her and all my family. Life could be so different and even in the midst of all the struggle....I'm so thankful...so blessed beyond words. Enjoy a peak into our FIFTH celebration!!

Thanksgiving Memories

2011-11-24T18:34:00.001-05:00

Five years ago, I woke up on Thanksgiving with searing pain in my head and tears from the pain of it. My sister in law and niece worked together to make a Thanksgiving meal for all us because I was on bedrest, pregnant with Lillian. We knew I'd be in the hospital the next day for an amniocentesis and and external aversion (where the manually turn the baby by pushing on your stomach). Five years ago, we never imagined the journey we'd be jolted on to. I am so grateful for the last five years and the fact that I am celebrating today with ALL of my children. Happy Thanksgiving.

This is the story of a girl

2011-11-22T18:46:00.001-05:00

who is keeping very strange sleeping times since tonsilectomy. A girl went to school today whose mother had to pick her up half an hour after she'd arrived because she wouldn't participate or get out of the teachers' laps. This same girl crawled up in her big sister's lap and in about one minute...fell asleep. At 6:30 pm. argh.

SO- she missed her Thanksgiving party and her birthday celebration. AND now, she sleeps...NOW? Ai-yai-yai. Not good at all.

I guess it's safe to say she is not back to her baseline. Her feedings are still not going 100%. Pukage is still a big problem.

Momma was having a BAD day yesterday, but I'm much MUCH better today. You should see the post I almost posted yesterday...YIKES!

To be Continued....

Tonsils out POD 2

2011-11-17T15:01:00.001-05:00

Lillian is not having a good day AT ALL. She woke up this morning with a temp and immediate gaggin and wretching. She actually slept through the night without pain medicine. ( her MOTY lost the battle of staying awake 20 minutes before the dose was due and didn't wake again until 5 which is when I gave her the dose she was supposed to have at 1230 *sucks in breath*) Anyway, I thought perhaps missing the pain meds caused the problem...BUT...when I started her feeding at 11, she seems to be ok until about 1130 when she became a vomit volcano. Not pretty. She pretty much emptied her gut...so plan B, I call my dear friend, Nancy, and ask her to bring us some pedialyte. We get the pedialyte, I cut her rate in half and start again. She dozes off and I think, ok, this is good...112cc's later, I run down to make a sandwich and return to Lillian puking her pedialyte, which continued on for 20 minutes. Plan C... Several phone calls later, her pediatrician has ordered her some zofran and changed her pain med to tylenol with codeine. It's three oclock here, she's gotten a dose a zofran and in 20 minutes I will give her the tylenol 3 and start up some more pedialyte at a very slow drip. She is not even wanting to drink now, which is bothersome, considering the throat really needs to stay moist or it will crack and bleed. Her hydration is way down and I'm trying not to panick. There is absolutely nothing routine when it comes to this poor girl. POD 2, midday, pretty craptastic at this point.

There really is no place like home

2011-11-16T22:00:00.001-05:00

Lillian is sleeping peacefully by my side. She is so happy to be home. We got home, Daddy took over, and I went for a nap. Course I woke up feeling pretty rough, but it's amazing what your own bed and a couple tylenol later can do for you. After a shaky, long, 24 hours, I'm feeling pretty good about how she's doing. I worry a little about her sats dropping tonight, but hopefully all will be well. She looks so peaceful right now. So grateful and relieved to have this done. I know we have to be watchful the next few days, but I am AMAZED at how well she handles it all. We are keeping her medicated around the clock just to be on the safe side. She is quick to grumpiness, but overall doing well. I know it is awful to say, but I dread going through this all over again in a little over a month. She's older now and so much more aware of all that is going on. I think she is afraid to rest unless she's here in her environment. THANK YOU ALL so much for your support and prayers. I kept thinking to myself how I wished someone would just show up with a meal for us so it would be one less thing to worry about, and guess what? I get a text as we are leaving the hospital, a dear friend had a meal in the crock pot for us. See, He is already ahead of me!! It is awesome to see God work and know prayers are being said. Last night and this morning were so awful and I was a mess. I laid down and decided I was just going to bawl and I just began to feel a peace about me, I felt the Holy Spirit at work in my soul. Bringing me comfort. I watched Lillian began to rebound her sats and finally sleep some. God is good and ever present. Thank you Jesus.

Tonsils shaved out...POD 1

2011-11-16T08:11:00.001-05:00

Lillian had a brutal night. She coughed and coughed hard all night long. She slept very little. I think she is just too afraid to rest. She is currently sort of sleeping, but her sats are hanging below 90, so they put on a little O2. Been a long little while since Momma had to worry about sats. She had several episodes of vomiting mostly related to the violent cough, but some not, so they gave her some zofran. I think that's the only reason she is sort of sleeping now. Something I find very strange, she is very disturbed by the sight of her IV in her foot. I hate when they come in and flush it bc she just has a cow. It looks to be in fine condition, but she freaks out. I need about 10 extra hours of sleep and auto pilot on my van so I can make the drive home, assuming they let us leave. I have a bad creeping feeling about the oxygen need at the moment though. I thought we already had discharge orders probably waiting for us, but notsomuch. I guess we will see her DR after all. I'm tired and feeling the overwhelming desire to have a big ole cry, but am holding back the tears bc I don't want to look like a crazy person if someone comes in.

Surgery Update

2011-11-15T16:10:00.001-05:00

Sitting in Lillian's hospital room waiting for her to come from recovery. Procedure went as planned, extra medication applied to curb bleeding. Waiting to see her. Surgery time was pushed to three due to complications before her.

Winner and Updates

2011-11-14T18:51:00.001-05:00

So, Lillian is go for surgery tomorrow. Have to be there at 1030am. Surgery at 12 or 1230. Overnight.

The video shows what is coming to.......MANDY, one of my life long friends!!

Thank you EVERYONE who prays for Lillian and our family. It means more to me than anything that you pray and come and check in on her life. Bless you all ;)

Drawing tomorrow

2011-11-13T23:44:00.001-05:00

Drawing tomorrow, I promise, crazy day. Stay tuned.

Dear Albuterol

2011-11-11T09:01:00.001-05:00

BLOGAVERSARY GIVEAWAY CLICK ME

I thought in my twisted mind we might have said goodbye to you. In fact, we have had to reinstate you to the family. And not just for a quick trist...nay I say with more and more frequency. Could we get by with just once a day?? No, no...no...could we manage with morning and night? I think not. Back to sometimes every four hours?? Say it isn't so. I guess I shall thank you for your readiness and ability to heal a cough...BUT, can we make this reinstatement brief? I shudder at the thought you may linger for an indefinite time.

Yours Truly, Michelle

Blogaversary and Giveaway

2011-11-10T16:20:00.001-05:00

Three years I've been blogging here in blogger. I think it's time for a celebratory giveaway. Surely I have some faithful readers/stalkers out there....I hope. :) Leave a comment and that is all you have to do. I will draw a name Sunday and post the winner and what you are getting. Leave me an email address so I can contact you. The gift will include some of my favorite things. Thanks for reading and commenting.

IF you are new to commenting....click on comments, type a comment in post comment box, select anonymous in user box if you don't have google or anything, just make sure you put your name in the comment box..:) Is that clear as mud? If you know me outside blogger, through facebook or personally or you aren't able to leave a comment, send me a personal msg that you read this post! Easy peasy!

IEP

2011-11-07T11:45:00.000-05:00

I sit here, thirty minutes past Lillian's IEP, struggling with my emotions. The first thing they hit me with was Kindergarden and how as things look right now...Lillian would be shipped straight into a regular class with no help and about thirty minutes a week of individual education time. It has been a fear of mine that they would just want to ship her straight to K. I'm not a teacher or a doctor, but I KNOW Lillian is not ready for the general education dept. She is delayed, she doesn't have concrete communication, she's physically delayed to a degree which I think would be dangerous to her in a normal classroom all alone. Her teacher feels the same way. I don't know even know if I'm conveying this clearly. Her teacher will have her tested in the springtime again, in the belief that she will qualify for the special needs classroom at a different elementary school. She would be in this classroom and spend thirty-forty minutes in a general education classroom with her peers each day with an aid. The whole situation is stressful. I have been told repeatedly that I should not worry about K bc it is so far away. Well, guess what? It's not. These are decisions that have to be planned on and made in the here and now. You know what I get more than a little tired of...being told when and why I should be thinking on or considering certain issues. The best thing I heard in that meeting was silence. It is A LOT to consider and decide on. Bottom line, I feel like I'm stuck in between a rock and a hard place. Just hearing the words Moderate Cognitive Disabiliy labeled on Lillian is a hard pill for me to swallow.

I just don't want her to struggle. Just like I don't want to see any of my kids struggle. It's been a bit of a rough morning for me. Maybe in a way that most people can't understand.

Medically, she is still battling a whole lot of snot. Her mornings are rough with lots of gagging and choking. She struggled with her food in speech this morning because of all the drainage. My warrior girl just keeps going with the flow.

The 15th

2011-11-06T19:07:00.001-05:00

Lillian has been recovering so slllllllloooooooooooowwwwwwwwwwwwwwlllllllyyyyyyy. Let's see, did I already mention the "nurse" from dr lungs put her on a different antibiotic than he and I discussed? Omnicef. Did I mention how she filled me in on the dangers of Lillian being on such a high dose antibiotic? (levoquin) when I mention the name. Since when do their opinions override the doctors? Annoying. I've had two doctors ok her being on that med, heck, if I looked at all the horrible side effects of all the massive drugs they've put her on, she'd have never gotten out of the NICU.
By this past Thursday, one of her ears had started to bleed. My brain just doesn't comprehend how she gets sicker when she's on medicine to help her get well. Frustration. I have kept her out of therapy for the past week in order to maybe give her more rest. Her surgery is now scheduled for the 15th. Tomorrow, I have her IEP at school. Dreading it all. Doesn't help that my hormones are at their peak right now. Just sayin. Her disposition seems to have returned to normal, so at least we have that. We gave her treatments every night for about a week and that seemed to make a huge difference in her nighttime cough. Hopefully we will be good for surgery by next Tuesday and we can keep moving forward. Going to be a fast week that will fly by me and I'll wonder where that time went.

Reschedule?

2011-10-30T22:30:00.000-04:00

I absolutely hate to report that I just had to break out ALBUTEROL....yes, ALBUTEROL for Lillian. Dr Lungs' Nurse had me start omnicef three days ago, and she seems to be getting worse instead of better. She is whiney and fussy...not at all herself. The junk coming out of her nose is green and seems to have NO end. I think I detected a low grade fever. I got her to sleep and she did nothing but cough constantly. Coughing to the point of wretching and puking, so I gave her a neb and aside from the initial coughing at the beginning, she has not coughed since I turned it off. Ope, take that back I just heard one...but I can tell it helped her. Last night, I thought I heard some croupy breathing, but it only happened when she got to running around. After I finished her treatment it almost looked like she was retracting. (makes me sick) I don't really mind if we have to reschedule, in fact, I'm probably going to insist that we do. With Queen likes to bleed after surgery, I'd prefer it if she didn't have a hacking cough. I am sad, though. I cannot even tell you the last time I gave her an albuterol treatment for sickness. It tells me she is sicker than she's been in a long while. Likely no tonsilectomy on Tuesday. Maybe we can get something scheduled for right after the antibiotic stops. *sighs*

Support

2011-10-25T11:42:00.000-04:00

I attended our local special needs support group for the first time a week ago. It was interesting. I left feeling just as "alone" in this walk as I usually do. Most of the families represented had children with Autism and the conversation didn't really get past talking about gluten free diets or their kids not leaving their clothes or shoes and socks on. There was some discussion about sleepless nights...I could identify with that to the extent that I've dealt with it, but not bc Lillian was up playing in her bed..but bc she is sick, vomiting, running a fever, or needing medications. I decided I would need to go at least one more time before I gave up on it. The day after the meeting I had a chance meeting with one of the parents ,who was rather quiet at the meeting, in the post office. We had a nice long conversation, and I felt so connected. More connected than I had sitting in that group. Yesterday, if you read yesterday, we got a new diagnosis for Lillian. It really was good information to have. I don't really like it. But, at least we have another piece of the puzzle. It is always hard for me to digest bad news. It is an answer to prayer, but still bad news. It affects me, it makes me hurt, it makes me sad. I feel, physically, like my heart is being squeezed. Now, I have not sat around and moaned and cried and complained about it, I really haven't thought too much more about it. What does stick with me, is was what seems to be lack of support. ONE person I spoke to yesterday allowed me to cry, did not question my feelings, did not judge my heart. She understood...she understood, bc she has a child who is chronically ill and had a very difficult childhood. The bottom line, I just need to talk it out, to feel the way I feel and not feel judged or questioned about WHY I do. I appreciate words of encouragement, but I STILL need my moments....does that make sense? Any parent could attest to feeling pained over their childs' poor decisions, or a procedure that child may have to go through...I have joy and excitement, faith, understanding and grattitude for all that she HAS come through and endured and I see how greatly God has protected her through it all. I talk to God about it...ALL of it. I AM only human. I have my earthly thoughts and am discouraged from time to time. Just let me be. You have my permission, if I sink into a pit of despair, to drag me out of it....but I have to process, I need to process. It brings new light to the support group. While I didn't find myself completely at ease there, I think I will continue to go because I can just be and people will understand and NOT judge why.

Some results

2011-10-24T14:19:00.000-04:00

By now, you would think unexpected results would not bring me to tears. The good news, I guess it was just a few tears rather than a full on cry fest. Dr Lungs office called and our results from Yale are back. The bad news, her ciliary hairs (sp ?) do not function properly. Her first words were...the biopsy was abnormal. She has dyskinesia. Well, I throttled into a twenty question frenzy. She seemed overwhelmed and didn't know how to answer...so she went to get Dr Lungs himself. He was with a patient, so she said he would call me back. Her other cultures came up positive for strep pneumo, probably the same reason she is chronically infected in her sinuses. ? I'm guessing here. The good news...well, at least it does help to explain why she gets sick so easily. We have to be vigillant in airway clearance and she even suggested we start doing percussion twice a day.....Lillian will adore that I'm sure. OH- and there's nothing they can do about it. She is just high risk for pneumonia and lung infection in general. So...I give thanks. I'm thankful we know there is a reason. I am, however, pained. Just to hear that things in her body that should work right..just don't. It hurts my heart, but I am thankful to know.

Let the games begin

2011-10-17T14:23:00.001-04:00

Just got the call from ENT. Lillian is scheduled for her tonsilectomy on November 1. Pharygeal flap surgery to follow on December 20th. These are the steps we have prayed over and hoped to happen. Now we have approvals and dates....and I'm already feeling the nerves kick in. These appointments, to me, are kin to her palate repair and decannulation. It seems so much rests on these important surgeries. Then, my mind starts...are they THAT important? These are the issues that have to be addressed to hopefully move forward. Right. That is the mantra...right? It pulls at my heart to know I am ultimately the person making these choices for her. Do I have to put her through these surgeries? It seems that it gets harder every time we face surgery. I know---believe in my heart this is the direction to go...but it just doesn't make it easier for me to think about.

Lord, let my mind rest on You and Your goodness. Give me Your peace. In His Name

We find favor...

2011-10-12T15:23:00.000-04:00

We met with Dr Plastics again today. He seemed less than enthused to us there again. Lillian's speech therapist accompanied us, which I have to say was AWESOME! He asked why we were there again, I told him we brought the V&E for him to see. After some fiddling with the TV/player, he returned to the room and watched the video. The short story...he still thinks she has developing vocabulary problems, and Mrs Speech and I both were thinking he was calling it a no go again, BUT...he said she definitely needed some help and a pharyngeal flap would perhaps be good for her. Can I get a WOO HOO? She allowed him to examine her all by her own doing, she gave him five and blew him kisses and he stated "she has grown so much since last time I saw her"...um, OK, whatever....at least we are moving forward. She will have to have a tonsillectomy first and a months recovery time. She is scheduled for the flap on December 20th for the time being, so we'll have to see how quickly Dr ENT can get her in for the tonsillectomy. So thankful for positive results. This picture isn't from today, but it sure reflects my current mood!!! Woo hoo!

Lillian "breaks it down"

2011-10-06T19:03:00.001-04:00

I know I must sound like a broken record

2011-09-25T20:44:00.000-04:00

but I HATE puke. I HATE that every time we have hooked Lillian up for a feeding for the last week maybe two...that she is gagging and puking with it. Today, at her last feeding, it was more than just a little puke, it was a volcano. Projectile. While we were in Noble Romans for my nephew's bday. I drove home conversating with the Lord about why she has to puke. Her whole life has been like this. It can be SOOOOO discouraging. Even from the time she was born she has struggled with this. I hate that she cannot even really eat anything to make up the calories. She does not have a nissen. I don't really believe it is GERD. She was on medications for over two years and they didn't make a difference. Ususally, throwing up is her "tell". Her tell that she is sick in some way. Her ears are not oozing, she's not really coughing anymore, BUT, the vomit rages on. People keep asking me how she's doing....PTL she's not in the hospital, suffering with some respiratory junk....she's not at her normal right now. It is downright painful to see her suffer in this way. She must be hungry. I want to cry, but I'm not letting it out. Remember, when I posted there are things? This puke cycle is right up there with things I don't get.

I've never been the kind of person who cared what other people thought of her when we were out somewhere. But recently, there is a voice in my head that says..."hey, these people aren't used to seeing a child puke like this routinely" and I don't want people that do know us that I've got her out exposing everyone to some stomach virus.

Feeding intolerance. That's what they called it in our genetics counseling sessions. I guess I thought she'd outgrow it. Here we are though, almost five years in, and she is still struggling with some of the same issues.

Don't misunderstand, I am utterly grateful for the battles she's won....its just hard for a Momma to see her babies hurting.

Getting some glasses

2011-09-22T21:05:00.003-04:00

Here's a little preview of what my baby will be sporting pretty soon~~

How much can a tiny body take?

2011-09-21T21:09:00.000-04:00

I'm just going to forewarn you that I may sound a little like a raving lunatic...

Today, I attended the viewing of the baby I mentioned Monday who had passed away. I waited in line for an hour. The place was packed. I neared the guest book, and started to lose my resolve. Tears pooled in the corner of my eyes, I've never been to a baby's funeral before. I stood there, inching closer to the family, and his Mom was so distraught. It was heartbreaking. They kept stroking him in the casket. He looked so sweet and peaceful, like he was sleeping. Mom had stepped away from the casket when I got up there, but her Mom, his Grandma was there and I held her in a tight hug as she thanked me for coming up....*shakes head* The grandparents all appeared to be very stoic. All I can think of is the days ahead for them. How right now, they are probably still reeling in shock and how hard the next days, weeks, months, and years will be. I mentioned them for prayer in our Bible study this morning, and like people do...someone mentioned that we had to remember God has a purpose in it. I do know this, but at that moment, I wasn't really interested in particularly receiving her thoughts in the matter. While I have NO idea the loss of a child, I've stood very close to it. I know it sounds selfish, but when I experience what I did today, I think of my own children, which I think all parents do. What would I do? How would I handle it? I think especially of Lillian and while she is SOOO incredibly happy most of the time, she is usually fighting something ALL the time. I start to wonder how long her body can handle the issues she deals with 98% of the time. I wonder if anyone else thinks that of their kids? There are those who will say...you can't think like that...I don't think like that ALL the time, but in times like these..it's hard not to.

Lillian continues to struggle with her feedings and I think I need to call the Dr tomorrow and touch base just to get his thoughts. It's been a hard day.

Brutal night

2011-09-20T11:33:00.000-04:00

Lillian dozed beside me in the bed until about 11pm. She began to writhe and whimper in her sleep. Her facial expressions showed pain, she started reaching out to me. Crying, she continued to twitch and grunt. Something I'm not quite sure we've ever endured with her. It took her about an hour, but she settled down and went back to sleep. Round about 1am, she woke us screaming...I entered her room to find her face completely flushed and her vomiting. She puked and puked and puked until her gagging, guttural retching, brought me to throwing up myself. She jerked and pulled and cried out in pain. It was really a stressful couple of hours. I tried to comfort her, asking her if her belly hurt. The grunting seemed so strange. I was stuck, right there, not knowing what to do. Something was wrong, I couldn't fix it, and she could NOT tell me what was happening. This continued on for about a solid hour. She finally laid down but continued to moan and grimace in pain. I picked her up, tucked her into me and rocked as hard as I could on the bed. I began to cry out to Jesus, in faith, to take away whatever was going on with Lillian, and give me discernment to know if I needed to take her to a hospital. I must have done this for close to an hour. She finally fell into a restful sleep and slept until we woke her this morning, our car wouldn't start and we had to take Daddy to work. She seems OK today. I just started her first feeding of the day, so we'll see how it goes. It's hard to be in this spot of wondering if a medication has caused this or if there is something related to the bronch, or if there is just something else going on in her body. I'm thankful today for answered prayer. She is seemingly no longer in pain and I hope whatever it is has indeed passed. What a night.

There are things

2011-09-19T21:15:00.001-04:00

in this life that I will NEVER comprehend. I spent this day in prayer for a friend who found her five month old baby in his bed this morning, not breathing. A perfect, healthy boy. He sits in the arms of Jesus as I type this. I sat in a prayer meeting this evening wanting to cry out, I don't understand...I wanted to wail in the unfairness, that this young mother, will have to bury her son. Her one and only son. Her first and only child. I still find myself constantly wondering why this had to happen. How can I comfort this family? I find myself in tears, wishing things were different. I opened my bible to do my evening bible study, the first section asked me to memorize a passage in Daniel. The first verse was so impactful...v 20"Let the name of God be blessed forever and ever. For wisdom and power belong to Him" v 22 'It is He who reveals the profound and hidden things, He knows what is in the darkness and the light dwells with Him." These verses are in Daniel chapter 2 as Daniel seeks God to give the King an interpretation of his dream. I find some comfort in the words of Daniel. Tonight, the Pastor read about Mary and Martha weeping for the death of Lazarus, telling Jesus if He had only been there, Lazarus would live, and the bible says, "Jesus wept". I've wept, A LOT, today. I weep for the loss of this precious boy. I weep for the grief that must surely be engulfing my friend this night as she goes to her home. The home that just the day before held the laughter of her son. I weep because I want to KNOW. I want to understand. I weep and I pray.

Isaiah 55:8-9 "For My thoughts are not your thoughts, nor are your ways My ways, declares the Lord. For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts"

Romans 8:28 "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."

Long Day

2011-09-16T18:43:00.003-04:00

Update.....Right after posting this, Lillian spiked a fever. After speaking with Dr Lungs, he said he took a look at some of the preliminary findings and it looks as though something bacterial is growing in the lungs. We are to give the levoquin 24 hours and see how she does from there...

We arrived to the hospital for Lillian's chest xray and bronch. We were to be there at 1030am. Upon completion of the xray, we went to surgery and things moved rather smoothly until the administered the versed. They gave it to her and then it seemed to take them forever to come get her. They also insisted she have an albuterol treatment, which I don't like...but pick your battles, right? Anyway, they took her back and they did biopsies and sent them for several different tests and cultures, some of them will be sent to Yale for study and those particular results won't be back for 4-6 weeks. He is supposed to call me in the next week with results from some of the cultures. We sat in the waiting room for quite a while and I started to get that uneasy feel of wondering what was taking so long after the doctor had spoken to us. We finally got called back and were told that she actually coughed up quite a bit of blood. Typical is pink tinge secretions, but she had spewed up blood. They had to call the Dr Lungs back to look at her again, and he said we just need to keep an eye out for anymore. He took some lovely pictures and even gave me a copy. He did find some granulation tissue at the stoma site and said we just needed to keep an eye out for breathing issues. He also pointed out the words I've always dreaded hearing...tracheal malacia. I always sorta thought in my head we had dodged a bullet, her not having that particular affliction, but apparently some has developed. He seemed pleased with the results, but it always makes me uneasy when they tell me there is something new....as many bronchs as she's had and no doctor as ever diagnosed that. Now we wait. He did order her back on Levaquin due to her recent coughing that has stirred up. Thank you for prayers. It has been a long day and she has just now started acting like herself.

An oversight

2011-09-13T16:50:00.000-04:00

I've already been struggling with the fact that Lillian will have to go to Kindergarden next year, right, I think I might have mentioned it a time or two. Maybe not. Let me back up a moment, I started volunteering in the library at school again this year. Started last week. I almost had a big old break down just watching one of the little girls in the K class. She was in Lillian's class last year. She was doing ok, but just putting my child in her place next year, brought on quite a bit of anxiety. I stuffed the thoughts in another place in my mind and went on about my duties.

Today, as the aid helped Lillian to me at the bus stop, she said to me..."she is probably pretty wet, she had a lot of juice today" As soon as I picked her up, the smell of poop assaulted my nostrils. I said, "ewww, and pooppy too." I get her in the house, go to change her diaper, and find her diaper almost overflowing of poop. (I can't think of better terms, so poop it is) I get it, she could have done that from school to home...maybe....except there are defined reddened areas where poop has been on her skin for longer than a two minute ride home. Now, my child, her skin is sensitive. She breaks down quickly. She's red on her lower back where poop has been pressing into her. I go back in forth in my mind about what to do. I'm convinced within myself that this is NOT a "just happened" situation. I decide to email the teacher. I was nice. Factual. I mean, I really am a reasonable person. I'm not sure if I feel better after the response...an apology...and the words, this was an oversight. I read on to learn the last time her diaper was checked was 2 when she was found dry. She gets off the bus at 330. You can do the math I'm sure. Oh, and noone smelled it....ok. I'm trying here people. I'm trying to be rational. Right now, I just feel disappointment. How am I supposed to be comfortable with her, a nonverbal child, being in a place for several hours of the day where at least 3-4 people, who work in CLOSE proximity to my daughter, don't notice something like that...and even tell me she is "likely really wet from all the juice she had at snack" ...but we didn't think to check her again for an hour and a half....seriously? who likes pooppy diapers??? oh me me, me I do....Come on. Discouraging. An oversight. *sighs* I did also get the teacher's assurance they would check her from now on....thanks.

warning post may be scattered

2011-09-12T13:41:00.002-04:00

You've been warned, that's all I'm sayin'. I woke up late this morning, having set my alarm clock for 8PM rather than 8 AM. Huh, go figure. So, I woke up at 9AM, the same time I'm supposed to have Lil at therapy. :/. I was feeling very frustrated at a certain person, besides myself, for not having made sure I was up and going....I could NOT comprehend why he would not check to make sure we were going since he knew we have this standing appointment EVERY week. I rushed around, threw my clothes on, tried to make my hair NOT look like the grease ball it was bc I was not going to get a shower before going into a public place. Lillian was already awake, playing in her bed which I did not hear, probably because we have two fans running upstairs. ANYWAY- I get her to therapy half an hour late, and rush home to shower. My Mom calls me just as I've stepped out of the shower and my very short, frenzied Monday unfurls on the phone. I found myself, blubbering away...pains in my chest with each swell of tears. My head is saying, oh Michelle get a grip on yourself, it's not a big deal. Not a big deal. I started pouring out to her or at least in my head how difficult it is sometimes. I don't complain to garner sympathy...I guess I needed to just let it out. We have been approached by a few different groups through church to be involved in the youth groups. My problem, I WANT to say yes, I want to jump in and DO it all. The trouble is, I can't jump in whole heartedly and be dependable. Here it is...the issue I'm trying to say delicately...I think, I may be upset because I just can't. I have a child who is sick. She can be walking around fine by day and sick as a dog by night. That is who she is. I accept that this is the season of our life right now. I guess I found myself in a place before now, that people mostly knew that about us....here, they don't. I find my soul aching when I try to explain these issues to people who don't. Even as the words come out of my mouth, my mind is thinking 'they probably just think I'm lamely copping out'. That's ok, too. The Lord knows my heart and the whole situation. Thankfully, my Mom, just listens and offers support. (Thank you Jesus, for not giving her more "words" for me this morning.) As I jump in my car back to pick up Lillian, one of my new favorite songs begins to play...Yaweh, yaweh, we love to shout your name oh LORD....I sat in the car and worshipped just for the duration of the song and found my heart so blessed and relieved. I came home and received another phone call, this time Lillian's ENT. Her assistant to be exact. Dr ENT has spoken to Dr Plastic and they want us to make an appointment for a surgical consult. He wants us to bring the dvd of the procedure. I have to tell you, friends...I'm unsettled in my spirit over this. I haven't made the appointment yet. Lillian's ST has offered to attend the appointment. I'm very grateful for that. It is mildly intimidating for me to face this DR again, who just a few short months ago, pretty much blew us off. A lot for a Monday if you ask me, but this is our everyday. Every. day. Lillian will still be having her surgical procedure Friday, and the rest of this week is full of therapy, school, cross country meets, bible study, church meetings and much more...Friday will be on me before I know it. I know so many of my fellow warrior Mama's are bearing much heavier burdens right now, I feel led to share this verse...
Matthew 11:29-30 " Take my yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light. "

Thank you, Jesus

2011-09-07T17:16:00.002-04:00

The V&E was a success!! I was a wreck this morning prior to the test. The person who was going to go with me couldn't make it and I was a nervous mess. I asked for prayer on FB, quieted myself in prayer, and finally called my church and just prayed together with the Pastor. So many things hinged on the outcome of this test...I was having one of those 'this is too much for me to bear, please take it God' moments. He prayed with me and then sent our church secretary (also my dear friend) on a field trip with me. What a blessing!! Such a relief. I don't think I stopped talking all the way. Lillian tolerated the procedure, she did what the doctor asked her to do and we know for a fact this is a stumbling block for her in the realm of speech and eating. SO- Dr ENT is going to speak to Dr Plastics directly and see what other "proof" or testing he desires to go forward with a prosthetic or lengthening of the palate. If he is still not on board, we will seek another opinion. Guess I'm going to have to start praying over Dr Plastics. Thank you so much for your prayers...God is good.

Dr Lungs orders a bronch

2011-08-29T16:24:00.003-04:00

We saw Pulmonary today. He wants Lillian to have a bronch done in two weeks. He's going to do a ciliary biopsy, BAL, and a flow somethin' or nother...I don't have the orders right here, or I could type it up. ANYWAY, it is a more in depth way to study her immunity. He also said her sinus CT was very severe in the stuff it showed in her maxilla sinuses. Very unusual...hmmm, we've heard that more times than I care to think about, right? When does my child do anything in the typical fashion? He said she also suffers from some type of rhinitis...can't recall his exact wordage..but it causes her to react much like someone with allergies, it just doesn't show up in allergy testing. So, back on nasonex...OH- AND, I told him we stopped using cingulair...and he said....sinus infection is a side effect of the medicine...is that for real? I mean seriously, I could have been making her sicker all along. Geesh. Or whichever one of them ordered it for her....crikey.
He ordered another chest xray bc he hadn't done one for her in a while, so we will do that the same day as the bronch. She will be in the bronch about an hour.
I kind of sit on the fence about this whole bronch thing. It won't really change the treatment regiment for her...BUT it could rule out further issues.
We have thought she was getting sick again for several days, she just isn't her "normal" self. He said her right ear is starting to drain. At least I know I'm not a crazy person, I think....
Her V&E has been rescheduled to next week, which is fine with me, one trip a week is enough for this woman.

On happier news, she was in the bathroom the other day, "straightening" her hair with a flat iron. All was good until she attempted to plug it in... crisis was averted, but she gave up on the task once I wouldn't let her plug in. She's a smart little cookie, that girl.

Goodbye Facebook

2011-08-28T20:23:00.002-04:00

Hey Bloggy friends, I'm taking a break from facebook. There are lots of little things adding up that bother me deeply, so I have deactivated my account. I'm not sure if I'll go back, although I like being able to send out prayer requests and the such, I'm not happy with most of what I see there. Just FYI.

Next week

2011-08-24T18:06:00.002-04:00

Next week we have an appointment with Pulmo and two days later we will be going in for the much anticipated V&E. This is a procedure where they will place a scope up her nose down to the back of her throat and watch where her tongue goes as she speaks. In a perfect world. Her ST says she is tolerating the qtip up the nose pretty good, but still the biggest hitch...she cannot say the words they want to hear for the testing. :/ I have been feeling a little out of sorts for the last couple of weeks. A little edgy if you will. I think deep down, its the test. So much hinges on the test. I keep telling myself that it doesn't matter. Nothing ventured, nothing gained. I want to not care if it is unsuccessful. It is not the end of the world if she doesn't speak. It also doesn't mean that someday the test can't be done again. Ready or not, it's coming up on Wednesday.

Reality reminder

2011-08-19T11:16:00.003-04:00

I see the progress Lillian is making as she accomplishes new things. I LOVE it! There is unspeakable joy to see her run, walk, or even swallow a piece of cereal. Yesterday, I had the opportunity to watch her in her physical therapy session. It was such a reality check of how hard she works to do things I take for granted. I posted a video a while back of her riding her tricycle. She can push the peddles about three revolutions and that is it. When I asked her therapist why she thought she only did it three times she said, "that is all she has the strength to do". It was like my heart was being squeezed. It reminded me how truly hard it is for Lillian to be able to do what she does do on a daily basis and a realization as to why she sleeps as much as she does. Sometimes, I guess I'm living in a fairy land. Maybe I can't even convey how I feel, but just to realize how much work it takes her to do what she can do. I love that she can go up and down the stairs with assistance, but it never really dawned on me how much strength it takes her to do so. I'm not even sure why I'm writing this, just on my heart.

When you can't sleep, count your blessings instead of sheep...

2011-08-08T01:02:00.004-04:00

......and you'll be counting your blessings.....

It is one a.m. and I find myself unable to sleep, so I started counting my blessings. This week has been rough...Lillian sick, fevers spiking high and fast, ear oozing still, vomit volcanoes...to make a rough situation rougher, I became ill as did my eleven year old. Lillian's fever broke after five days. Me, I'm still hanging onto a little yuck, and Isabelle is better, but one eye is very swollen. Tomorrow, I think we will return to "normal" schedules. As I lay here, thinking of the past week, I'm so grateful Lillian is sleeping peacefully again and has made it back to her own bed. I'm struck by the awesome blessing it is to be able to have her in MY bed, right beside me. Not me falling asleep in a chair over the bed, or sitting up on the couch counting hours til meds need to be given. Now, to say I slept would be stretching, BUT, at least I could have her right here beside me. Able to monitor her breathing, her temperature, her movements so easily RIGHT beside me. Something I couldn't do for so much of her life. I vividly recall in that first year feeling so bewildered because I couldn't just pick her up from the crib to even comfort her. There was so much equipment and tubes and attachments.....oh my how I can recall the pain that sliced through me as I felt helpless to really BE a mother to her. I shed so many tears as I feared she would not bond with me or feel loved bc I could not physically show her my love. Counting my blessings instead of sheep.

Shocking news

2011-08-04T15:37:00.002-04:00

NOT. Even though we were confident Lillian only had an ear infection, I had to take her to the doctor this afternoon bc of her prolonged fever. Well, surprise surprise, she only has an ear infection. Her appt was at 140, I had an hours drive, she was only in the office about 10 minutes, and the rest of this time has been spent in the pharmacy. Long story short, I feel terrible, Lillian is in need of meds, and the pharmacy doesn't even have the courtesy to let me know I might need to come back in a while bc of problems with the script. GRRRRRRRRRRR Thanks CVS. A little communication goes a long way, too bad they didn't use any.

First Camping Trip

2011-08-01T21:53:00.002-04:00

OH, no pictures of Baby Alli, please....

Mom, please pick me up, I don't want to walk in the lake...

Higher Daddy...

Wait, wait, get my good side...

Where do I start with this tent??

Yeah, that's right, I like camping.

Lillian did GREAT on our weekend camping trip. Unfortunately, she has been sick ever since we got home. She started with a raging fever, then we discovered a running ear, and later today we've discovered a bloody ear. We are on 24 hours of relentless fever. It was such a relaxing couple of days, and now back to reality with a vengence I'm feeling a little frustrated. I just HATE it when she is so sick. Hate it.

Taking a "staycation"

2011-07-28T19:41:00.002-04:00

I cancelled Lillian's therapies this week. First time ever I've cancelled her therapy for any reason beyond sickness or hospitalization or dr appts. I have to tell you, it's been WONDERFUL. I felt immediate relief when I woke up Monday morning and had to be NOWHERE. LOL. I am eternally grateful that Lillian is still able to benefit from therapy and insurance continues to pay for it, but, friends, this Mom is tired. I do not work outside the home anymore, but quite honestly, caring for Lillian and the rest of my brood is more than a full time job. I know, I know, I know, I am surely not the only Mom out there who grows weary from time to time. I've always felt extreme guilt when I've contemplated cancelling her therapy. I decided if we truly had a vacation to go on, we would have to cancel therapy. Since I won't be taking any vacation any time in the near future, to my knowledge, I decided this would be the same thing. So, it's a staycation. Stay home, pretend for a week, that life around here is normal. It has truly been blissful. We are capping off the week by going on our first camping trip. This should be interesting. It is supposed to be dreadfully warm and I'm seeing scattered storms thrown in the mix. Of course, we realize, our plans may not work out for Lil. She doesn't tend to do well in the heat, so we shall see. That is the non-news in this house lately.

Immunology

2011-07-14T15:54:00.002-04:00

Lillian's immunology tests came back just fine. PTL. At least we are ruling things out if nothing else. It sounds kind of sick to hope something shows up, but then that would be like answers or some solution to help her. Hopefully, she will grow some more. It is a struggle to keep her gaining weight, seriously, she was up to 29 lbs once and now she's hanging at 26-27. There for awhile, when she figured out how to run, she ran everywhere, she was probably burning some extra calories.
Today was the last day for ESY. I am so glad, between her school, therapy, and Bethany's summer school, it hasn't felt much like summer to me at all.

I have been down with an infection for several days and am so glad to see the pain finally subsiding enough to cross my arms again. You never realize how much you cross your arms until you can't do it anymore. ;0)

I need a vacation....

Happy 4th!!

2011-07-12T20:08:00.002-04:00

She road her pony...played with random objects, flew off the back of the teeter totter swing...

Decided some fireworks aren't all that bad, but some really are....thoroughly enjoyed a great independence day!

Moving Forward

2011-07-07T13:01:00.002-04:00

After spending time with Lillian's speech therapist, and she in turn speaking with our ENT, it has been decided that we will go forward with the V and E in August. Our ENT plans to speak with Dr Plastics and pick his brain. She aslo feels if we get the V and E done, we can go to him again with the results. We never do things the easy way, do we? Course, in this walk, I'm not sure there is an "easy way". I think I've found some peace, either way. It is par for the course. It just takes me a day or two to absorb the initial shock of things. I always have hope, no matter how disappointed I am. God works it all out in his time. My lowest moments are my strongest times in Him.

In her speech time yesterday, Mrs. Speech found out if she held her finger under Lillian's nose, Lillian could make a very clear S sound. It was AMAZING! It goes directly to evidence that her plalate needs more work to function properly. As hard as news comes that I'm not prepared for, I have unbelievable joy in just hearing the "ssssssssssss" singing from her teeth.

Sometimes I wonder if I should update on her blog as soon as I am able to, because I so don't want to sound like Debbie Downer, BUT, it is my hope that no matter what someone is going through, there is ALWAYS hope. If there is someone just beginning this journey, perhaps they will find comfort here. I write what is REAL, what is happening here in my insignificant life and hope it brings glory to God, because I know it all works for His good because I love Him. That is my hope.

Plastics Update

2011-07-01T15:59:00.003-04:00

We waited a little over an hour for the Dr to come in and say, in less then three minutes, that Lillian is too immature and too delayed to even attempt studying the mouth/speech problems. All along, we have been being told that Lillian's speech is impeded due to her structural problems. Not that I know anything whatsoever, but I'm not sure how he can tell just by looking at her that she is too delayed to try the study. He assured me that he is very experienced in this area, which I have no doubts of, but it just seems like I'm missing something. I am SO disappointed, and that would be an understatement. I feel crushed. He went on to say it could be YEARS before she was up to doing the V&E. He told me there was no reason why she shouldn't be able to speak, so it was her brain development that is the problem. He sees that she is receptively there, but not able to get it out. He told me he didn't want me to be discouraged....um....ok. I just blurted out that I am discouraged. I then proceeded to cry and try not to cry so I could try and make sense of the things he was saying. Which made me feel like a complete idiot. He didn't seem to be at all impressed with the speech report I'd given him. He didn't even read it prior to making his decision. He then went on to tell me that he did these types of surgeries on kids who were 13 and 15 years old. If that didn't just want to make me puke. He also said her tonsils are pretty big and perhaps they should come out and that should not have any bearing on her speech...once again, contradictory to what the ENT has said. Also, we've seen three different doctors in the last month and all of them have had a different opinion on the size of her tonsils. It is mind boggling. Are they big or not? Then I feel like, if not one person can agree on the size of her tonsils, how much of what we are dealing with in the area of her speech is subjective? So, the car ride home again was brutal. Struggling to just accept it, really what other choice so I have? I was smacked in the face, again, with how hard this journey is. What a roller coaster. I felt, again, that overwhelming pressure of thinking how hard it is to bear at times. I remember on her first visit back to the developmental peds clinic, the doctor saying that her life should not bring our lives to a screaming halt. That the world did not revolve around her. Truth be told, when you have a special needs child the exact opposite happens. The dynamics of your family change, your finances change, it affects every single aspect of your life and sometimes, its a hard. Very hard.
My wounds are gaping and hurting right now, so please understand my venting. Sometimes, I just need to. As always, I'm thankful, just hurting. God is good all the time.

**something else I remembered...he also stated her tonsils are big enough, that if he did do more work to her palate, they could cause her airway to obstruct again.

eeeeeeeeeeeeeee

2011-06-30T18:12:00.002-04:00

OH MY WORD. Lillian just went to the fridge and said "EEEEE" (long e). I said "eat" she shook her head yes, I opened the fridge and she pulled out a bag of CHEESE....I'm just about to jump out of my skin. WHOOOPPPPEEEEEEEEEEEEEE!!!

Feeling better

2011-06-28T13:06:00.003-04:00

Lillian is feeling better, her feeds are at least going better. She is still coughing quite a bit in the mornings, but her night time cough seems better or I'm sleeping through it.

Sometimes, I just wish I understood what her body is doing and why. I wish I could peek inside her and fix all those things that cause her troubles. For whatever reason she is prone to feeding intolerance. That in itself could make me a basket case if I let it. I just grow weary for her.

During church on Sunday, our SS lesson was about desire. We were asked what the desires of our hearts were. Before I knew it was coming, ( most of the time I know) tears were streaming down my face. Another classmate was sharing and when she finished the teacher looked at me, he grew concerned and I just stated my desire was to have my daughter be healthy. That was all I could muster. Immediately I was surrounded with friends in the class praying. Being new in our church, few people know the journey we are walking and have already walked. I'm so thankful to have been there at that moment. Later, during the service, the same topic was preached, and I began to think, perhaps the desire of my heart is not what it should be. My child is ill. Medically fragile. While I desire that she be healthy and believe God can take all that away, perhaps my desire should be to accept that she is not. I continue to raise her up to Him. He knows my desires even before I utter them.

Update

2011-06-23T18:17:00.002-04:00

Lillian woke up this morning choking, coughing, gagging, and puking. I went ahead got her off to school bc I thought it was just a morning drainage issue.....BUT, when she got home and I hooked up her feeding, she immediately started gagging and puking. We have been religious with ehr miralax so I know she's not constipated. This incident escalated to the point of what I believe was an asthma attack. She was retracting pretty badly... She spiked a temp and fell asleep in my lap. I called the doctor and wanted to get her seen, she gagged all day yesterday off and on, and didn't get her whole feedings in yesterday either. They scheduled her an appointment. I was concerned that her gtube being ripped out my have injured her stomach....the dr called back and wanted her to have chest and belly xrays. Bottom line, she has sinusitis, parabronchitis, and a paralytic ileus. He put her on a 10 day course of Levoquin and wants us to give her stomach a rest tonight and then very very slowly adding back her feeds and hopefully getting her back to 150 ml feeds by Sunday. The ileus can be paralytic due to shock to the stomach, so it could have been the gtube issue or the fact that I have slowly increased her feeds over the last couple weeks. Always an adventure with my girl. long day.

Remember that appointment

2011-06-20T13:45:00.003-04:00

I try, I really try, I think I'm upbeat, I have a positive attitude, I try not to allow all the obstacles drag me down. Today, i'm failing. tired. Mentally tired. Our appointment is rescheduled for July 1. Hopefully, there won't be a need to schedule a nonemergency surgery in her appointment time that week.

First day of ESY and a little photo shoot with big sister..

2011-06-15T16:59:00.003-04:00

all glammed up!

ESY (extended school year) started today for Lillian. It will run for a month. Then, about a month off and back to regular school year. Summer days are slipping away. ( She had a great day aside from standing out in a thunderstorm 40 minutes wating for the bus, all went fine)

I'm getting psyched for our trip to plastics next week, hoping he will decide to do the prosthetic. We will also be getting her immunology done then as well. Life is staying busy around here and last night I had a moment of sheer, well, I don't know what..but I longed to take the family and go to a beach and have a week of lazing on the beach. I've even thought about it all day. How wonderful it would be not to HAVE to be getting up, getting ready, going to school, going to therapies....sighs...Sometimes, this life just needs a little slow down, a good slow down. As much as I love my life in this very moment, I long for a vacation with my family. Just a time to relax and enjoy each other, no jobs, no schedules....sighs again.

Dear Blogger,

2011-06-08T15:52:00.001-04:00

I'm getting mildly annoyed with your little bugs....I cannot seem to post comments on anyone's blogs. So, friends, I'm here, I'm reading, I just can't comment....*stomps feet and grunts in fit*

Allergy or not

2011-05-31T16:59:00.002-04:00

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.

Versed, check, Sedated Sinus CT, check

2011-05-27T12:49:00.004-04:00

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.

A little follow up with Dr.Lungs

2011-05-23T20:52:00.002-04:00

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.

cough cough cough

2011-05-17T08:14:00.002-04:00

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.

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

2011-05-09T21:45:00.003-04:00

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.

The snot has left the building

2011-05-02T18:06:00.002-04:00

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!

sooooooo sleeeeppppyyyyyyyyyyy

2011-04-28T10:33:00.002-04:00

Usually, Lillian asks to go up to bed. This night, I sat and watched her little head bob up and down and she dozed off in Ally's playpen. too cute. Don't worry, I took her straight to bed, but you know I had to get some pictures first.

Vestibular Eval

2011-04-26T12:50:00.003-04:00

Today we made an early morning run to KY for Lillian's vestibular eval. I have to say, the doctor was fabulous. Very sweet and friendly. Aside from driving past the building three times, I finally made it there with a pounding headache...(bc I hate to be lost). It was an interesting evaluation. We have had concerns about Lillian's steadiness and sometimes seeming dizzy. It seemed related to ear infections,which makes perfect sense. I found out today, and I probably should have already realized it, knowing Lillian is delayed also means her vestibular function is also delayed. All of the things kids learn from birth builds their vestibular movements. Since Lillian did not start walking until the age of two, her vestibular abilities should be considered delayed about two years. It was a light bulb moment for me. Seriously. She said a lot of times, therapist will work with a child on a level where the child should be without considering she needs to go through all the steps she missed being developementally delayed. I'm probably not explaining this very well....since she is 4, therapy might be focused on what a four year old should be doing...not necessarily what a 2 year old does. Make sense? Ironically enough, many of the activities we discourage the kids from doing with Lillian too much, are the very things she told me to start doing with her twice a day if we can. How's that for MOTY? I couldn't get over it, as I thought about it. I mean, spinning or twirling. This activity builds her balance. Who knew? Walking or bouncing on soft surfaces. (She sent us home with a big old piece of foam). Did you realize these little activities that just seem to be fun, are actually exercises in building balance?I thought it was cool. Anyway, the best news, there is no vestibular "problem" per se. I couldn't give you the technical terms she used, but Lillian does not have anything that is out of whack... her issues are basically from delay. Not ear or eye related. This is good. We have to go back next month for some additional testing and a hearing eval. They are getting in new equipment specifically for pediatrics they are going to evaluate her with further. I highly recommend this facility if you live in the southern area and need help. Heuser Hearing Institute. Nice, clean facility right near 65.

In other news, have I ever mentioned how much I love watching her run. OH, what a blessing. In the car on the way down this morning, KLOVE was playing Mandesa's Only the World, and all of sudden I hear, "Wooo" and Lillian was bobbing her head and clapping her hands to the beat of the music. It was awesome. The drive down and back was pleasant, it rained only while we were in the clinic and not while I was on the road. I am so thankful. I dreaded going somewhere I've never been before because I hate getting lost. Once I drove around the block twice, I called and noone answered the phone, my stress level really went up. It all worked out though, I feel so peaceful right now.

ENT again

2011-04-15T15:39:00.003-04:00

Another long day driving to see Lillian's ENT. We are pulling back on the prevacid and she wants her to see an allergist. So add another dr to the list. It's all good. Her appointment was at 1:15 and we saw the doctor around 2:10. She really wants to take out the adenoids but that will just cause more problems for speech. She also did not speak to the plastic surgeon like she said. She says she will touch base with him before our next appointment. I have to say the snotpalooza is better, but still a big problem. Poor kid can't even wear her hair down or she winds up with a snotty hair mustache. It rained off and on all the way down there and when we arrived to the office, it was pouring. Of course. LOL. I did get to hold a sweet little baby boy for this Mom in there so she could run out to her car and grab her diaper bag. He was so precious. Didn't even cry when she gave him to me. I'm TIIIIIIIREEEEEEEEEEEDDDDDDD. So glad I prepped my main dish and got it in the crockpot before we left. Oddly, I saw at least three dead deer on the highway. Kinda strange for this time of year isn't it? AND speaking of the highway..what on earth could possibly be covered up on a semi trailer requiring 3-4 police escorts putting tons of distance between the truck and their cars? Glad I wasn't behind that mess. I'm so tired, did I mention that? Rainy and cold outside and it cost me just under $70.00 to fill up my gas tank. OH.MY.WORD. We are in a heap of troubles if Matt gets laid off for very long. They are shutting down the factory for five days next week. He works for a Japanese company, I imagine you can figure out why. God is good, it will all work out.

Warrior Mama goes to bat

2011-04-11T11:50:00.003-04:00

I've spent five days discussing this speech issue with Matt and praying in depth for a clear, concise answer. These are the days that my people pleasing personality get a real swift kick. I admit, I'm a people pleaser. I don't like to make waves. I don't want to be viewed as difficult. I decided I would go in and just discuss my concerns with the rehab manager and depending on her response, I would know what steps to take next. So today, on a nauseated stomach and a restless, sleepless night I prayed all the way to rehab that I could muster God's strength to clearly communicate my position without having a total meltdown...and friends, you know I'm prone to the meltdown. I nervously approached the desk and asked to speak with the rehab manager. We stepped in the room and I laid my case. Me: Mrs. Speech has informed me that Lillian's half hour session is being dropped in order to see children on a waiting list. She states that we will progress back to her 2 hour sessions in summer. I don't understand how adding more children will ensure Lillian's ability to get her time slots back. I feel there is a lack of commitment for Lillian. I didn't like it when her hour was dropped to half an hour, but I feel I've tried to be flexible and reasonable but this is just not something I feel or her pysician would feel is acceptable. Lillian, herself, waited on a list quite some time, nearly a year, before being able to be seen by this clinic. If Mrs. Speech feels like she is at an impass with Lillian, then I would just rather be told that and find someone who can work with her. I like Mrs. Speech, but I will go back to her old therapist and drive half an hour or whatever need be in order to get her what she needs. I feel I've been placed in a situation of a rock and a hard place. Moving her, would then cause her to go an entire month without therapy due to insurance authorization. I just want her getting the therapy she needs and speech therapy is her greatest need. Yes, she gets 30 minutes of speech at school, but that is not always one on one and they don't work on feeding at all. Ms Rehab Manager: Ok, I need to speak with Mrs. Speech and see why Lillian's time is being dropped. If she is progressing so well or there is attention span issues. Me: Not as it has been explained to me . ( i reiterate why time is being dropped.) Ms. R.M.: ok, i would not want Lillian to leave. Let me talk to Mrs. Speech. I leave and, Lillian's OT takes her and Isabelle go to get her belly xray and get her back to school. I return, again nervous, Mrs. Speech brings Lillian out and gives me a short report. Mrs. Speech: So I get the feeling you don't want to drop her time. Me: I talked to Ms. R. M. Mrs Speech: Yes, I know. Me: No, I don't want to drop her time. Mrs. Speech: Ok, then we will add her back. I'm not really sure where my communication skills lack. I told her Wednesday that I didn't want to do it. Should not have been a surprise, I will say, though, that they present it as if you have no choice but to do what they say. I keep getting that experience. May I once again state that I DO NOT have a medical degree. Anyone missing that BIG fact? I depend on the them. An uncomfortable morning, but with a positive result. AND guess what? I didn't even shed a single tear. WAHHOOOEEEE! How's that for answered prayer? Thank you God for Your strength.

Untitled.

2011-04-07T11:37:00.003-04:00

I am having a blah kind of day. Not really sure why. Just am. Yesterday, Lillian's speech path informed me that because they had a waiting list of six kids, they were going to cut Lillian's half hour session so they could get these other kids in and out and hopefully by summer get her in for her one hour twice a week sessions. Maybe, this would not bother me so if all of Lillian's biggest needs are related to SPEECH. She kept asking me if that was ok, and I said, no not really. I don't know if I should get her back into her previous speech therapist or what. I don't know if I should just tell them NO, and I had to wait on a list for her to get in there....I'm feeling very helpless, yet again. How can I feel that I am doing what's best for her when the professionals in place aren't meeting her needs. I get a complete feeling of loathing when I am mixing formula each and every day. I want my child to eat and be healthy. I desperately want to break that boundary of speaking. This was just not what came to mind when we decided to have just one more. You know how your kids are sick and they don't like to take their medicine. Usually that only lasts seven to ten days. How about everyday....twice a day having fluids forcefully shot up your nose?? How about every day...having to sit while a breathing treatment runs. How about every day being hooked up to a hose four hours a day restricting you activities and movement. How about every day a bloody nose. How about therapies every other day just striving to learn to do what comes normal and natural for most everyone else. Today, I'm tired. I'm mentally going through the checklist of all that needs to be accomplished and did I give this med and that and have everything done that needs to be. I think most times I feel so normal...just not today. Not today.

Complete? Did I say complete?

2011-04-02T22:27:00.003-04:00

You can imagine my horror when upon cleaning my very messy desk...I came across the last little stack of pictures from Lillian's first year. ARRRGGGHHHHH. I just CANNOT believe it. Fortunately, the way I laid out her birthday pages, I can still add in the pictures that I missed. Today, my niece came over and we scrapped the afternoon away. Kind of. Her baby boy was fussy today, which is unusual, so we had many interruptions. I was able to complete several pages and I think I have two to three more to go. Problem with working on a particular theme, I feel like I'm making the same page over and over again. So, my recent excitement at having completed her album was a short lived celebration...I just hope I can fit the rest of the pages in the same book. It is getting pretty fat. Oh well, gave me a good reason to get my desk better cleared and challenge my brain a little. Lillian is still draining like a faucet and now it is bloodier than ever. Is it possible that nasal washes are irritating her more than helping? I mentioned Amanda being her with her baby. She is nursing and now Lillian is "nursing" baby Ally. I just about cracked up when I figured out what she was doing. My sister always used to be so appalled when my other kids emulated nursing with their dolls when I was nursing Madeline. Never a dull moment in this house.

Maybe some drugs are working

2011-03-30T11:04:00.004-04:00

I have to admit, it made me very happy to say my little girl was on no meds except the one to help her poop. I was relieved by how much she has gone through and has managed to be able to live daily with no medication. Maybe this is a good reality check for ME. Deep down, I think I just don't want her to HAVE to be medicated. I think that goes along with feeling like she' s more "normal" if she's not on a laundry list of medication. Perhaps I just needed a swift kick. Here's the thing, I worry, minimally, but worry nonetheless, about all the medication that poor little body of hers has had to metablolize in her short little life. I worry about the long term side effects these meds will have with prolonged use. So, if I seemed a little downtrodden about all the meds, that's why. I think it feels a little like a security blanket when medication can slowly be taken away. It is a sign of improved health. For Lillian, in this season of life, she needs the medicine. It is a difficult pill to swallow (pardon the pun, but a little levity is never a bad thing ;) ) at first, but let me tell you, NOT hearing a constant cough all night long for months on end sounds awesome. I wish she didn't need meds, but the reality is that she does...and it is helping...Praise the Lord. She is still snotty, but improving daily. Can I get a WOO HOO?

*Lacey, if you're reading, how's that for some bad photograpy skills??

Complete

2011-03-29T11:13:00.002-04:00

Ok, so I know this is going to sound totally ridiculous. Bear with me anyway. I have been working long and hard on Lillian's first year scrapbook. It has been such a labor of love. I had much more time to work on it when we had nursing care, but we haven't had that in quite some time. Initially, I wanted to get it done before she turned two...but time and circumstance definitely swayed the timetable. I am proud to announce, this past Sunday I finished her first birthday pages. WHEW! I can't even believe it. As thrilled as I am to have it done, I'm feeling a little sad. It has been in the making so long...and now it's done. I've incorporated some of the poetry I've written about her in there and I think I've captured a lot of her life in pictures. That first year seems like I was solely in survival mode. Just getting through one day at a time. Bittersweet. I've never before made a scrapbook with a sole purpose...ie vacation...christmas, you know. I'm just not that organized. I'm attempting but it's going to take a while..lol. I hope you enjoy a quick glimpse through this little video!

ok, so I had to make two videos...don't judge me...;)

A little visit with Pulmonolgy

2011-03-28T17:03:00.004-04:00

Lillian had a follow up appointment with her pulmonologist today. We had not seen him in a year...gasp....I started relaying some of the issues we've been going through with the snot-a-polooza. They (both doctors) were not too thrilled with the looks of her nose. They did say her lungs sounded good though. Can I get a woo to the hoo? Although her lungs were clear today, Lillian has been having issues after she gets very active or sometimes even just mildly active. She gets to coughing and we have to just make her sit to get her calmed down. They say this is an asthma issue. SO---they asked me how much she is coughing and I said ALL NIGHT LONG. For months. For months she has been battling the issues with snot, ears, and sinus. The doctor wants her to start taking claritin and also added a daily pulmicort neb. In the last week, Lillian has gone from taking only Miralax to keep the poop moving, to nasal washes and nasonex twice a day, omnicef, prevacid, claritin, and pulmicort. I think this is the most medication she has been on since she was a tiny baby. Part of me is torn about it, but most of me just wants to find something that helps her. My prayer is that she will find some relief in all this medication. Having her off everything for sometime is apparently not the answer for her, as that is the road we have taken for the last two years. I'm ready to give drugs a chance again.

The above picture is of Lillian holding her baby cousin Riley. She just loves him to death!!

Walk in the park

2011-03-24T18:37:00.002-04:00

Or a walk to the park, I should say. Monday night we took a family walk, about 1/2 mile to the park down the road. I thought I had a picture of everyone walking, but I couldn't find it, so I guess I don't ;). It was fun to walk along behind everyone and just watch. We arrived at the park, where of course, Bethany and Rebecca chummed up with some school pals, but Madeline, Lillian, Isabelle, Matt, and I walked between all the playground equipment, letting Lillian explore. She LOVES going down slides and aside from the really really tall one...she cruised down every one. Matt stayed on the ground as she scoured the playground equipment as I sat clenching my teeth watching. She works so hard to get up the stairs and get to where she's going. She has a really hard time righting herself if she is nudged and still doesn't do very well with self protection. So if she gets nudged just a little, it's usually all over. I squinted my eyes as other kids brushed by her and held my head just the right way so she wouldn't fall from the ladder Matt was guiding her up. It was such an enjoyable evening, I see many more like it as the days get longer and warmer. Hard to fathom we had 70 degree weather here the last couple days and today it snowed. Good old Indiana weather. Always keeps us on our toes.

Yesterday, she was in her 1 1/2 hour long therapy and I was across the street at the library when we were rushed out of the computer lab for a Tornado warning.( That is the only thing I dislike about this time of year) I might have made record time getting across the parking lot to the therapy center to get back to my baby girl. She was undisturbed as we were forced into the stairwell to wait out the ordeal. Interesting, how most of the office staff in the stairwell joked about it. Saying things like "take teh whole house if you come through" "don't just take the roof, take it all". Having been through some very unpleasant natural disasters in the last couple years, I found it very disconcerting. Not to mention, I was not the only customer in the stairwell. I did not find it very professional. I believe they were staff from the upper offices, not necessarily the rehab, but even still...a little unprofessional, I thought. I doubt any of them would have been so glib if their homes were destroyed by a tornado. I really wanted to go right out the double doors to my van and get Lillian home in the basement, but 1) didn't know if they'd let me out....and 2) wasn't sure if I wanted to be home alone if the tornado did hit us. We spent about a half hour in the stairwell and finally headed home. I was also concerned about how the conversation was being received by Lillian's little ears. She may not communicate very well, but we know she hears and understands most of what's going on. She wasn't the only child in there either.

Other business, I'm not sure all this new medication is making any great improvements for Lillian. She is still a snot volcano (sorry, but it's a good depiction). She is still coughing much of the night away. *sighs* She most definitely does NOT care for nasal washes and I don't think I do either, but such is life.

Running

2011-03-23T14:06:00.002-04:00

Did you ever really think about running? I never did until Lillian. I never thought about stretching one foot in front of the other, movement to get from one place to another in the quickest time. Four years three months....today I think she ran. Truly ran. Almost head long into the garage door, unsteady, head bent over, chest way ahead of that little body, but running. Two feet to the gate. I felt my heart swell, a smile creeping over my entire being. Lighthearted. Like getting my breath after being underwater too long. Wish I'd had a camera going. Running. And then tears.

This is Therapy, right?

2011-03-21T11:34:00.002-04:00

I can't really express how I feel, listening to Lillian, right now, "reading" to "Ally". I did not pose any of this, she walked me out to the enlosed front porch (which is very nearly the closest thing to being outside) had me help her up and asked for a blanket. *pauses to see why she is calling me, she points to the thesaurus and wants it*

and she reads. I didn't take her to speech therapy today because she is miserable with snot. Think this counts? I wish you could hear her "talking" right now. Therapy alright, just for Mommy instead of Lillian.

"MY BED"

2011-03-20T20:27:00.003-04:00

See anything unusual about this bed?? I washed this up hoping it would be a nice little soft bed for our dog. It was left here in this house. So far, the dog...notsomuch. Someone else adamantly demands this is "MY BED" One hard slam of the hand to the chest....:)

Saturday Sillies and ENT update

2011-03-19T14:13:00.002-04:00

For some reason, Lillian carried her feeding bag over to the hallway and this is what we found...what a cuke! We had a follow up visit to the ENT for her ears. Her ears, which I have already been treating again for two weeks, were clear...course, that is the hope when antibiotics on board. So why oh why is she still draining snot like a fountain?? Her allergy tests were negative. Viral something for weeks and weeks yet months on end? I think not. I get so discouraged. I'm so exhausted of her being sick ALL the time. The snot, the congestion, the heavy breathing, the vomiting, the coughing all night....it worries me....GREATLY. She cannot possible FEEL good. It escalates and gets worse, it gets a little better, then it gets worse, it just cycles round and round. I told the DR. that I felt lost, I just don't know what to do anymore. Here's the thing, her ears don't drain, even with tubes. If we ignore the drainage that starts in her head, her ears eventually rupture. I'm at a loss and feel totally incompetent. I left the office, four prescriptions in hand, and a one month plan to come back for a tonsilectomy if she is not better. Tonsilectomy. That scares me. Lillian tends to bleed. If you know tonsilectomy, the risk, bleeding. She struggles so much. More surgery...still possibly removing the adenoids and maybe getting the pharyngeal flap in. Talk about second guess Sally, that is me. I think I need a good cry. I hate hearing coughing in the night, and that is the main serenade in this house these last months. She has starting waking up A LOT in the middle of the night recently, so I think...is it the coughing, is she refluxing, is she just having bad dreams, is she having apnea episodes? The heavy night breathing gets my dander up, as you can imagine.
There is nothing worse, at times, then your own mind. My drive to KY and back makes that all the worse. I try to listen to the radio, talk to Lillian...something to stop my thoughts, but I can't shut it down. My cousin, rescued me with a phone call all the way home yesterday. PTL.
I will end with this little video of her morning sillies...

Gnomeo and Juliet

2011-03-16T22:46:00.003-04:00

Today, for the first time EVER...Lil' Bil got to go to the movies. We all went as a family and she did INCREDIBLE. We started her feeding, which takes an hour, when the movie started and she did pretty well. She didn't freak out when it got dark..she did get a little nervous when the screen went dark btw previews though. She would reach out for me but was quickly calmed because the time was so short. She at popcorn, spit most of it out, and drank some ICEE. She got a little frisky when her feeding was over, but overall, I think she enjoyed it. Mostly, I love when she responds to the movie as any other child would. It cracks me up when she gets laughing at things that are funny. The theater wasn't very crowded, and the folks that were in it, were mostly kids.

Movie Review, it was cute. Worth a four dollar ticket and priceless as a first time for Lillian.

Just Cute

2011-03-14T16:35:00.003-04:00

Round about Valentine's day, we were in Walmart and as we walked by the toy department, Lillian was drawn in to the end caps by a display of stuffed animals. There were all different kinds of animals, all themed for Valentine's. There were four puppies, all the same puppy, just different colors. She pointed to one of the puppies and I handed it to her, yet she kept pointing to another one. Eventually she had ALL the puppies in her arms and was tickled to death. At one point, she had them all lined up sitting in the cart beside her. We showed Daddy, and she took it pretty good when I put them all back on the shelf.

I always make a little something up for the girls for Valentine's day, and it is always difficult with Lillian because she can't have all that candy. (I guess if I wanted to wipe chocolate piles up off the floor all day...) You know I went back and got her one puppy.

The other day I was changing the sheet on her bed, and she went into a total frenzy, crying and distraught, she followed me to the basement, all the way back up stairs, and I just couldn't figure it out. Why the strong reaction to washing her sheets?? We've done this before...well, when I was remaking her bed, I found puppy beside her bed and she was instantly relieved. Aha, she thought I had tossed him in the washer. When am I EVER going to learn? lol

"I like Steak and Shake"

2011-03-11T09:38:00.001-05:00

This cup is bigger than her...almost.

Cute as can be

2011-03-10T08:58:00.004-05:00

Addendum- Please notate that Isaiah has his hood up and Lillian does not....more evidence for MOTY?? How can Amanda even think she can compete with that? *shakes head*

Yesterday, Lil and I made a quick run to hobby lobby and I bought some scrapbook/card supplies that I really really really needed. All the really's should be a cue there...*clears throat* anyway we were able to have lunch with Aunt Rita, Cousin Amanda and "the boys" as I affectionately call them or "my boys" as I have none of my own. Lillian seems ecspecially in tunw with Amanda's six year old, Isaiah. He seems to be drawn to her as well. It is just precious. He held her hand all the way out of the restaurant and as we walked to van he held her tight. He would not release her hand until someone else took over for him. You know I had to get me some pictures of that.

"I like to ride my tricycle, I like to ride my trike"

2011-03-09T19:50:00.002-05:00

This one is for Shelley...AND everyone else, but a lot for Shelley. :)

Dr. Genetics "your daughter will need assistance to walk at least 8 years"

I know I could cry over just about anything....BUT, seriously this brings tears...such a blessing.

Miss Personality

2011-03-07T13:02:00.002-05:00

She grabbed my camera and was trying to take a picture of herself, I told her to back up and I would take one, *giggles*, is this priceless or what? Told her to come closer and I'd try again and she is too silly to stand still, so we get this.

I show her how she looks and say, let's try again...this is what I get...more crazy shaking around and a hasty exit of the room.

PS- that is a piece of ribbon I've been trying to save, but someone, ahem...keeps taking it...oh, and see that bucket 'o tools in the floor there. Got that for Matt for Valentine's day and she finds great joy in emptying all those pockets. I saw it coming, told him to move it, so I guess it's his fault if he can't find his stuff...lol.

Something I want to share

2011-03-01T21:32:00.002-05:00

I wrote this on my personal blog, but feel a need to share it here as well, however, I'm too internet/blogger impaired to copy and paste it here. Blogger won't let me. Hmph. ;) I hope there is encouragement to be found. While I find the day to day difficult at times, I know everything is as it should be. Check it out here