A post that needs no introduction...

MOTY strikes again...

Folks, it is official. I am totally the winner. I know you are all thinking in your head that you are the MOTY. Well, today, I, yes, I have conquered all and am the big winner. So, today is a school day for Lillian. Now, on her first day of

school I got a speeding ticket....yes, a speeding ticket. First one of my life. Well, a short week later, today, I go out to heat up the van as there is snow on the ground and I figure it is only fitting as a good mother, to heat up the car. At some point in the trek, I have opened every door to the van minus the back. Come in, get Lillian in her coat and head back out to the now warm car. I get her buckled in, open the passenger door and turn down the radio, and then proceed to shut all the doors. Go around to my door, pull the handle and no good. Get that acrid puke feel up my throat and come to realize that ALL, yes ALL the doors have somehow locked after I shut her door. So there I am in the 30 something degree weather, baby locked in the car. One of my nightmares come true. True to my being, I begin to quietly panic and call my hubs at work. Already in tears I am asking his boss to speak to him. Through panicked tears tell him what is going on. World's fastest phone call ends and he gets here thirty minutes later. I stand at the side door with Lillian telling me in signs that I stink. I did not regain feeling in my ears until close to three oclock. This spurns her worse EVER drop off at school. Not my day. Praise the Lord for watching over us and keeping her safe. So- even though I did not lock the door, they locked and I now truly have a complex. If you are having a bad day and feel like a worthless parent..just think of me. You will feel better.

I leave you with some pizza loving Lillian pics.

Ok, sorry for the disorganization...I can't seem to move things around...is this a blogger thing or dumb me thing?

Happy Birthday My Big 3 year old girl!

Now, if I could just get her to SWALLOW the noodles...

We ARE alive...

It has been a busy busy time. Lillian has been sick going on two weeks now, but I really think she is getting better. Each one of us in the house is taking a turn with a really bad tummy virus. NOT fun.

We had Lillian's case conference for school and it was harsh. To say the least. According to them, she tests out in the range of about 50, and a "normal" range is 90-106. While I was anticipating being told what she was not able to do, it still did not make it any easier to listen to. Harsh. I went in wearing business clothes and I think that helped me keep a straighter frame of mind. The days that followed, however, were not so easy. I cannot explain it better than to say it was hard. It was hard. It is reality and it is hard. The short story, she qualifies for all services and they recommended her to attend classes 4 days a week half days. All along we have known this was coming. We knew this was the next step, we did have concerns about her attending a classroom due to her immunity issues. The director of special education services tried a little speech on me about how hard it was to let our little ones go off to school---HELLLOO----really is it hard??? I've only sent four children ahead of her to school. Good grief. I stopped her quickly and told her that I thought it would BE beneficial for Lillian to be in a classroom- BUT- it would not be good for her health. At that point we whipped out the letter from the pediatrician and the stopped her in her tracks. What a day that was, it was difficult all the way around. This is not an easy transition. I'm struggling with it on many levels. The compromise, well, she will attend school at our "home" elementary school two days a week one hour per day. She will receive 30 minutes of each service total per week, education, PT, OT, and ST. This will all take place after school when no other children are present, sort of. She will be alone in the room. Clear as mud??? I already have a ST eval scheduled for her with our former first steps Speech Path and then we will seek further PT/OT services at our local hospital. Life is going to get incredibly busy in December.

Her stoma is still open, although very very tiny, and we follow up with her pulmonologist on the 18th. I can't really believe it has been a month since it has come out. every time I give her a treatment, I'm always looking for a t-vent to put back on. Strange. It is very strange to put her to bed with NO monitors. AND- did you know she will be THREE in nine days. THREE???? So tickled to celebrate another year!!

It has been a while

Life surely has changed in the Halcomb house. You would think I would have more time, but alas, tis not true. Lillian has been doing great. (til today she woke with a 100.00 fever and vomiting..trying not to fret...) She has just exploded into this wild child. She is into absolutely EVERYTHING! There are days I spend just keeping her out of the trash. She is doing so much more physically, it is just amazing. I really just didn't realize how much that tiny piece of plastic interfered with her day to day. I think it is record breaking how long she has gone without puking through feeds. We are trying more and more different foods and such by mouth to try to get her eating. She will chew solids to mush but just will not swallow. She does great with liquids, but not solids. Anyone out there got any tips??
She is almost able to run now...it is too cute. We are scheduled for her IEP on Monday with the school system, but the closer it gets the more I am leaning towards not sending her and just seeking indepedent therapies at other agencies. This is becoming a very difficult decision for me to make. Matt really does not weigh in too much on this subject. It is hard to know what the best/right decision is for her. I'm leary of making the wrong choice.

As I type, she is in the kitchen messing around, so I have to cut this short...will update soon.

Still hard to believe

Lillian has been doing FANTASTIC. Her night time breathing is a little shaky, ecspecially since the stoma is so so tiny now. It truly is unbelievable what a difference it has made to have it out. First off, her feedings have been great. Hardly any vomiting. I've been able to increase the rate and volume that she is getting. She is absolutely full of energy. She is doing things she has never done before. One day, she just walked around looking up. She is babbling nonstop and started saying ma-ma the day after we got home. She giggles ALL the time. Something I don't think we noticed because it wasn't enough air to make noise. It is hysterical. She has found that she can make a high pitched scream and laughs so hard at herself. I could go on and on.

We are getting ready for transition out of First Steps into the school system..our meeting is Monday.

We are still being very cautious about taking her out. We are kinda putting her in a bubble since she is still very high risk right now. The times we have been out, it is difficult to comprehend that we only need a diaper bag. I have so much more to tell, but it will have to wait as Lillian is busy getting into something.

Thank you thank you thank you all for your support and prayer. God is good.

A New Leg in the Journey

So---PTL it's out. Gone, goodbye trach. Thank you all for prayers. We just returned home today and I think I'm still absorbing it all. There is much to tell, but I dont' have time right now. i will leave you with this picture....

Tomorrow

First off, PTL Lillian is finally mending. Last night was the first night of no round the clock treatments. WAHOOO! I'm so relieved she is healing. I know God's hand is upon her always.

Tomorrow, well, tomorrow will be the longest drive EVER to KY. I think I haven't really had time to really consider things bc I've been so consumed with her sickness. I already have that feeling of not knowing how I'll feel when they come out of surgery and give us the word. Tears, I know there will be tears either way.



PS-
Is it wrong to throw yourself on the feet of the doctor?

Dear God, please be with Lillian tomorrow as she endures yet another surgical procedure. Give us grace to accept the outcome and your will for Lillian's life. In Your Name, Amen

Three Days

Since my last post and I'd love to report that Lillian is infinitely better. Notsomuch. Take note of the time, I'm doing her three am treatment and thought I might post a little update. She does seem to be on the upswing, I will say. Her cough is becoming more productive, I'm not sure there is great improvement in her wheezing, hard to tell when she coughs so much. She is stuck to me like glue, so clingy. To add to that we had to battle the constipation battle today (or should I say I had to battle it.) nothing like forcibly holding your child over the toilet in hopes that the position will be better for her. ACK. I think we are just going to go forward with the hospital trip, let them make the decision when we get there. I just don't know what to do. It is difficult to know what the right decision is for my sweet angel. I'm so afraid if we cancel, she will definitely lose the opportunity for decann. Matt has worked evening shift all week which has been hard, but has allowed me to catch a few winks in the mornings before he leaves, since my current bedtime has been running between 3-6. That just wears a person out. PTL we have been managing here at home, as I would be even more exhausted at the hospital.

Last Night

Was terrible. I really did think I would have to call 911. She absolutely could not breath. She was coughing and spasming worse than ever. I had to stand outside in the cold air with her just to get her some relief, several times. I was really pushing her treatments giving them in three hour increments and that still really wasn't helping all that much. She coughed the entire night. I have pulled out the prednisone and started that ball rolling. We have her on everything possible, pulmicort, duonebs, tobracmycin, claritin, and prednisone. I have used everything in the arsenal to try to help her. I'm praying that we saw the worst of it last night. Her poor little body must be so sore. Any other suggestions of any kind??

Really

Lillian has continued to run fevers ranging from 99-105. Her breathing has gotten worse and I am now up all night doing breathing treatments around the clock. It is exhausting and she has to be hurting from the gut wrenching, chest racking cough. UGH. We have a little over a week to get her back to healthy so she can have her procedures the 13th. I pray we are coming to an end of this cruddy virus. BLECK.

October 13

That is the day. The day they go in, do the bronchs and decide if her trach comes out. Here come the nerves...

Seriously

I find it almost funny, well not in the least funny actually...but believe it or not, my precious woke up vomiting today with a 103 temp...which she has continued with all day. It is just this evenign that she has started showing signs of subdued happiness. This will be brief, as she is sitting at my feet wanting me to hold her.

*sighs*

Is it any wonder I've made a sheet pan of chocolately, salty, gooey goodness and intend to eat as much as I want the whole night long.

Never Ever Ever a dull Moment

First, thank you to all my blog buddies who pray and "listen" and lend support and did I say PRAY??

Lillian continued to run a fever from Friday through Sunday. I took her to the doctor today and they tested for H1N1 and it came back negative thank goodness. They think it is viral....bleck. I just hope it passes and she can get back to her norm. Whatever that is..lol. Got the call from Pulmonary about the sleep study, (after I called twice last week) it was fabulous she said~ Can I get an AMEN??? HALLIELUGIAH!!! Tomorrow the planning begins to coordinate the pulmo doc and ENT for the dual bronchs. She stays overnight and if those go well, the trach comes out. OMGOODNESS. I truly cannot even begin to imagine what it will be like to see that thing come out. Really. It is just not even something I can comprehend. So, we wait anxiously, yet patiently for God's plan to unfold. I'm being reservedly optimistic. because I need to be ready for God's plan. His way not mine...I mean, we already know what mine is...hee hee.

Thank you all again, IRL and Blog Friends...if I were wealthy I'd take a trip to meet you all in person---such awesome people!!

I want it to be me

Every labored breath, every needle in your skin, every prod and poke-I want it to be me

Every tube inside you, all the surgeries, all the pain you suffer- I want it to be me

All the hospitalizations, all the doctors to be seen, all the therapies- I want it to be me

All of the diseases, all of the infections, all of the unpleasantness- I want it to be me

Every single fever, that seizure, just that one, how can I explain it except- I want it to be me

Every puked up feeding, all the food you don't get to eat, every cough and discomfort- I want it to be me

But its you, it's always you the weaker one, the small- why can't it be me

Take it all away, make you well, give you some relief, but I am simply helpless, just the standby, I don't want that to be me.


You are feverish and vomiting and I sit by your bed imagining the worse case scenario, I wish I could take it all. I hope you always know, I've always wanted it to be Me. I love you.

The Long Version

Last I wrote we were feeling pretty confident that Lillian would get decannulated by November. Well, I haven't written here, just because I've been trying to digest. We went back down to the pulmonary team last Monday. At that time, they determined that it was unlikely we would get everything done that needed to be in order to decannulate. PTL I had my friend with me to distract me on the drive home, but when I did get home and alone the news settled in. I really struggled on Monday and Tuesday, but come Wednesday, I thought I had a grip on it- until- during her feeding she started to cough....which led to the inevitable vomit fest. Each time I bumped the trach trying to get her shirt off, it just made her puke even more. I totally lost it. So, Wednesday afternoon, I sobbed into a towel while our wonderful DT listened and comforted.
During the session we chatted and I guess I just needed to get that out, as she worked with Lillian, the phone rang....it was the sleep disorder center...they had a cancellation for Friday and could get Lillian in. There was lots going on this weekend, including me being the guest speaker at a Women's retreat. Needless to say, God worked it all out. (as usual) She had her sleep study, which we don't know the results of yet, BUT, they were able to cap her for the second half of it. I think that alone is positive feedback!! YAY! We should hear something by Wednesday. She has also tolerated the cap here at home for 25 minutes and I only took it off because they only want us to do it for short periods of time at first. I realize, that decannulation still may not happen in our time, but at least things are headed in the right direction, seemingly.

Snotty but Good

Lillian is overall junky, but I'm thinking it's the season. I've been able to pull back on breathing treatments wahoo, can I get an AMEN? I have started her back on claritin, and it seems to be making a difference. And, I hope you are sitting....we are up to full volume feedings for the first time since June. Double AMEN! Well, mostly...it has been very difficult to get in her morning feed, so we have not been giving it. She always pukes it up anyway, so we don't try to force it on her anymore. So, when I say full volume, I guess I mean at each feeding, which hey, I'll take what I can get. We pulled her up to the table the other day and she had biscuits, gravy, eggs and man did she try her best to eat it. She was having a blast chewing and spitting....I guess I'm going to have to invest in bibs after all. It's a good thing! She loves butter, probably not a good thing, but oh well. I have been getting her soup and shakes when we have been in KY and had to get lunch. She loves the broccoli cheese soup from Micky D's. The speech therapist said shakes are a good consistency to get her on and I'm thinking the calories won't hurt her either. ( the calorie thing was a momism, not the therapist :) )

Isabelle has been pretty sick since Sunday and I'm hoping whatever it is does not make it's way to Lillian. Fingers crossed. I also wish Isabelle were better, so off to the doctor with her tomorrow. Never a dull moment here.

I love good news

Lillian had her modified barium swallow today and guess what???? She passed with flying colors. While we could not get her to take a bite of anything bc she was very unhappy about the whole situation....she did fabulous!! I'm so relieved. I really had doubts that she would pass, guess I'm always trying to keep myself prepared for worse case scenario so I don't get disappointed. She did hold some stuff at the top of her esophagus for a moment, but she did eventually swallow it with no problems. Even though we've been giving her drinks and tastes for a long time it is just a relief to know we are not endangering her in the process. Praise the Lord.

Woo hoo

Thank you prayer warriors. Lillian is finally fever free. We went back tot he doctor today and he said things looked and sounded good. She is still pukey, but such is life. She still has a really wretched cough, but definitely much better. We are going back on prevacid to see if that helps anything. She has a swallow study wednesday and follow up with the plastic surgeon thursday.

I wonder if they think I'm unstable

Lillian kept me up all night with coughing, vomiting and fever. Literally she threw up like every hour. So not pleasant. Today, we are back from the good old pediatrics office. Lillian got to meet a new doctor today and she really liked her. Poor Dr. Taylor, she is so mean to him. He was on vacation so she got someone we haven't had the opportunity to meet. I loved her, she was awesome! Dr. I decided to give her a rocephin shot. I love rocephin shots. I don't love that she has to get them, but they are so much more effective for Lillian than any oral/gt med. Dr. I says that something else has got to be going on for her to be running a fever for 11 straight days. I agree. (sometimes you feel like a nut job going in there so frequently, it doesn't help that I'm totally sleep deprived and mentally exhausted from seeing her suffer. ) Course, I prove my instability by having a break down, nothing like making that good first impression, huh? We go back Monday for another shot and hopefully we do not make it into the dreadful hospital before this is all said and done. Thanks for praying and keep them coming. Still in the woods we are.

See, that's what happens

It has not been a good day. Vomiting is back and very very fussy. Stupid virus.

I will not say it

Yesterday's post just had to be written, although I desperately wanted to share information about our long day in KY, I needed to get that off my chest first. Lillian saw two specialists Monday, ENT and pulmonology. First just let me say I got lost a few times in parking garages and buildings...although it is pretty easy to find where you are going in a car, it's difficult to figure out where you are supposed to park and such. So after finding myself in a completely wrong building, I finally got to her ENT doctor 15 minutes late. It was a ZOO in that place. All the time I'm sitting there thinking UGH all these people and their germs and she's already sick and I'm sick and we're spreading our germs. *shaking head* Again, it's wondering whether or not you are making the right choices. sidebar- non-parents should never pass judgement on parents bc sometimes you just don't know what to do. having children does not make you perfect. Anyway, we waited for what seemed like eternity, almost an hour and finally met the Dr. She was extremely nice. Really liked her. She said the tubes looked good and if they didn't fall out in three years, well then they'd need to be replaced. News to me. I thought they had to be changed every year. She was enthusiastic about getting her started on the decannulation process and was glad we would be seeing the pulmonologist later that day. That the two of them would work together on the process. They also scheduled her for a feeding study to see if she aspirates. That ought to be interesting. We were finished there in just enough time to reach the other doctor with five minutes to spare. Things were going fairly smooth until it was determined that she needed a breathing treatment. Well, I don't know why, but she cried pitifully though the whole thing. I don't know if it was because she was tired, hungry, or just feeling bad, but it was awful. They did use a different sort of mask too, it was not a pleasant ordeal. It was very strange to be talking about her to people who knew nothing of her history. There was A LOT to share. Needless to say, they have her on a totally different medication regimen to prevent going into the hospital, which has seemed to be really good. They also want her on prophylaxis tobramycin nebs---amen for that. They asked me about sputum cultures and I said, they don't do those at Riley and get this, she asked me why----now doesn't that just make you laugh??? I told her the reasoning I've been given and she just shook her head( this is the NP). So after a lengthy discussion the doctor came in. The quietest most mild mannered man. Very approachable. He was so soft spoken, I felt like I had to really listen to hear every thing he was saying. Bottom line....they are coordinating with ENT to get a flexible and hard bronch done to check the airways. I'm supposed to get her scheduled with the sleep disorder center for a sleep study. He ordered a cap for her trach and once she is over this illness, we are supposed to start capping her trach. He would like to see if she gets through everything ok, hopeful to be decannulated by November. This means upcoming hospitalizations and lots of trips to KY. Her swallow study is scheduled for Sept 3, we follow up with plastics on Sept 4, and I sitll need to call and schedule the sleep study. I've just been hoping to start feeling better so I have a clear head. It was an eventful, exhausting day. Scary. Exciting and scary all at the same time.

As for my title, I will not say she woke up without a you know what and she might be feeling you know what. She has tricked me every other day by appearing to be getting over you know what. So I'll leave it at that. Know what I mean?

Dear Virus, Infection, or whatever you are...

Please exit the body of my child. She is frail and weak and is tired of having a fever. She needs to keep her food in her tummy, she wants to feel better. She would like the body racking coughing to cease. You have managed to have her on any and all medication to prevent her from going into the hospital, you have been on an 8+ day rampage on her and she's tired. You have weasled your way into her sisters and her mother and none of them care for it either. They can better handle your wicked tyraid but it tends to make everyone grumpy, weak, and just generally unpleasant. You have managed to drop Lillian's weight a whole pound in a very short time....you have made her Mom question every decision she has made regarding what to do. Please make haste and leave this household. You have inflicted your damages and we need reprieve.

Notsomuch

Is she better, well, she tried to trick me yesterday, acting all happy and playful and aside from giving her treatments every 3 1/2 hours, she seemed to be doing quite well. (did I say treatments that frequent?? shhhh, noone has to know but us) Today-AWFUL-back to puking quite badly, fever has returned with avengence, and basically laying around pretty listless. Now, if we examine the history of the sweet little princess, she does tank and this would be right aroudn the right time. Her sats are still ok, 93-95 while sleeping and I just keep floating on the bubble of should i take or should I not. I did start her on tobramycin treatments as well, which has cleared up secretions from green to white. I think the good news is her cough is very productive. At least that junk is coming out. Monday we are supposed to go down to KY for the pulmonologist...good timing, right? I do believe tonight I will continue doing treatments through the night to help her have a better morning.

In total, now, since Lillian has been sick, every one of the girls are sinus-y and not feeling great. School has only been in session for a 7 days and here we go. *sighs*

Inquiring Minds want to know

Lillian is extremely ill today. She was up all night and finally slept for about two hours from 4-6am. She has vomited nonstop and is running a high fever. I was able to get 75cc of pedialyte into her a couple hours ago. It has been a really rough night and day.

To clarify a cockelburr...I grew up in the country, and when the dogs got out into the woods they would sometimes come back with these prickly puffy things stuck in their coats. Some could be small, but others would be larger than a grape. You really had to work to get them out of their coats. We always called the burrs. Matt, however, calls them cockelburrs. Not sure if it is a real word, but that is what I was trying to describe, I know, not a very pretty picture, but now you have a better understanding of what is coming out of her or trying to anyway....

It is obvious that her stomach is causing her quite a bit of pain and there is absolutely nothing I can do for her. I pray this is a 24 hour thing and she is coming around the corner on this thing. UGH.

Home Health Agencies and update

Ok, if you are not interested in reading the psychotic rampage of this mother, you may want to skip to the next paragraph. We have been having troubles with our supplier of Lillian's medical supplies. I ordered apnea monitor patches for her two weeks ago and still have not received them, and being told every day that they would be here the next day. Long story short...they want me to strap her into the emergency straps of the monitor....I'm sorry, you'd just have to see that to understand it.....not going to happen...at any rate, once again...people who have no clue what it is like to care for a special needs child. It is very incomprehensible for me to grasp the mentality of these people. People who are pushing papers and have no clue what your child's life is like. Treating your child as if they are not a person, but a mere inanimate object. Of course, it's not Praxairs fault (the supplier) and it's not Clarian's fault (the micromanager) according to both companies. GRRRRRRRRRRRR

Lillian was running a bit of a fever this morning but seems to be doing well for the rest of the day. I took her to the doctor yesterday bc she ran a fever all day and acted miserable, but nothing showing up on exam. She is currently still napping. Her feedings have still not been going too well, and pardon the frankness, but her poops are looking like cockelburrs as Matt likes to say. My sister pointed out today that perhaps she may be teething....that had not even crossed my mind, but perhaps the culprit of the recurrent fever. Hmmm, maybe baby. I'm supposed to be giving her enemas every night to make sure everything is nice and soft and keeps moving.

She was so cute today laying in my bed on my pillow teasing me that she was in my spot. Too funny. She also dragged her Dad's guitar into the living room and played that for awhile. I'm sure he would not approve, but what he doesn't know won't hurt him, right? LOL.

Kentucky and a Puke Fest

We are back from the Kentucky cardiologist...who was FABULOUS. Superbly nice man. Did her echo himself, which I really liked. He said he didn't see any evidence of the VSD...wahoo---however.......there is another hole, that we have NEVER been told about, that 50 % of kids have. He says that one is still open and if it doesn't close they can do it in the cath lab. He said it should be by the time she is 3. He said overall she looks great from a heart standpoint and he would see her again in a year.

Now for the interesting part of the day....the kids have been in charge of taking all Lillian's bags to the car, for some time, and of course they are also very anxious to be in the car and waiting. Well, we were roughly 20 minutes away from the house when I looked back and found that noone had grabbed her suction.....I had to do a uturn on the interstate, go back home, so basically blew my time frame all to pieces. Get home, find out they didn't get the suction or the trach bag......the two most important items that we must have. Of course, MOTY didn't check bc this is a routine that we have had for a long time. Despite that we get back on the road and on the destination. We get off on our exit and I'm needing gas, running late and not sure where the road is that I was expecting to turn on. So this nice man gives me directions and as I'm standing there pumping gas, the guy wearing his big baggy shorts and ghetto shirt comes walking by and checking me out. Now, I'm not one to think men look at me. AT ALL. But it is difficult to ignore someone who is walkign right beside you and gooning at you. Anyway, I ignore him...BUT as he walks back by his is muttering things at me under his breath...flashing his big old gold teeth smile at me and I believe talking about my "fine you know what as I'm pumping my gas" you can guess it---make the rhyme. I was NEVER so anxious to get in my car and get out of dodge. He backed his car up behind me.....*shivers* yuck.

On our way home, Lillian puked most of the way....but that is par for the course. Thankfully she is good to go from a heart standpoint and we see them again in a year.

In 12 days we head back to pulmonary and ENT.

Lather, Rinse, Repeat...

This is how I feel sometimes....this post is probably going to be very similar to my last. Lillian continues to struggle with vomiting......AND constipation. I've decided this is her life and that is how things will be. As long as she doesn't start losing weight and looking sickly I'm just trying to go with the flow. The one troubling thing was, typically her night drips go undisturbed...however, this last week or so, she has been vomiting in her bed as well. Nothing like having to roll your baby all over the place and get her changed bed changed, settled back down...sure vomit fest is finished.....every.single.night. Makes for tons of laundry too, albeit a minor issue. Not complaining...just trying to explain. So, the vicious cycle continues with the constipation...so unpleasant. I think it is the worst feeling to be so helpless to do all that you can and still not be able to help your child. She also has had an ear draining, which if you've followed you know, goes hand in hand with the vomiting. Things have been moderately better today, but it seems to be a daily change, one better day, one horrible day. This has also halted feeding attempts which we were trying to accomplish, but oh well....

In other news, she is continuing to learn new signs and the big sisters treat her like a trained monkey getting her to do any and everything she will copy. It is cute, but you know kids, they continually make her do things over and over again and typically things that will not improve her communication skills at all...lol, can't seem to bridge the gap to them....

She is no longer receiving PT because no therapist in this county wants to take her case. Not really sure why other than the fact that they would only be with us until November. I've been told it's bc noone has openings....so I'm trying to not focus on the negative and hope we don't lose ground. Still feeling pretty confident that I don't want her to attend public school at age 3 due to the germ factor...but time will tell. Lots of new things coming up this month.

So that is how Lillian's world is turning these days.

Still holding the Title

Man have I been out of the loop. Back in the world wide web and loving it!! I can't believe that I actually thought I'd never have a computer in my home....LOL. That's realistic, huh?? Anyway.

Lillian is struggling seems day to day with vomiting and constipation. MOTY here messed up the dates for her new Cardiologist, so we are rescheduled for Aug. So two trips in August to KY, so far. I just took her to the Pediatrician just to check her weight and such and although she is no where near being on the chart, her weight to height ratio was ok. She weighed 22 pounds and was 31 inches long. She is highly enjoying the new house and is getting very brave on the steps...she has fallen down said steps now three times (MOTY) which like to gave us heart failure. She is very busy getting into all sorts of stuff and really wants to be outside, but I'm not sure that agrees with her entirely and did I mention the heat and humidity reek havoc on her?? UGH.

As the time draws closer for the new Pulmonologist, the fear I have starts to bubble up. It sounds insane, but I want her to be able to live without having a trach. Yet, I'm terrified of her not having it. Does that make any sense? She is alive because of that small piece of plastic. Terrifying and closing in on the reality of finding out what happens next. It is strange to have such a jumble of emotions about it.

Sometimes you just have to stop and smell the flowers...

By the way, blog friends, I am having computer problems and am not able to post on anyone's pages....I'm here, just computer challenged...going off the grid this weekend to get her fixed...I hope.

Just a quickie post

Lillian is struggling with feedings and constipation. Again. The move has been difficult and things we learned about little Miss are...
1. She does not tolerate heat and humidity AT all.

2. She loves swinging on the porch in her toddler swing

3. Can't figure out of farm livin' is making her junky, although her treatments are pretty low right now. Have had to run some toby last week, but she's junky.

We see her new cardiologist in KY July 20th. Going to the pediatrician Friday to see what his view is on the feeding/pooping front.

I'm just slightly nervous that I have cancelled all her appts up North and she hasn't seen any specialist since her palate repair follow up.

So, anyway, sorry this is brief, but it is still crazy here with everything. Hope to start catching up with all my peeps soon!

So much

Lillian is finally getting full volume feeds...wahooo. I'm a little gun shy to even type it out. I tooke her with me to Auntie Marcia's so the big girls could swim in the lake and it was really humid. I think it was not so good for her because today she is yucky. Her feedings are still going ok though. PTL. It thrills me to no end that she is not puking.

We are in the process of getting new therapists....our PT and ST are not going with us when we move. So I've made choices, just waiting to hear back from our coordinator.

Found out bc of her medical history she may be eligible for homebound schooling through the school system...that makes me a lot more comfortable about school.

We have dates in KY for pulmonary, cardiology, and ENT coming up this summer. I still need to schedule her opthamology but there is so much going on.

How you doin?

Watch for the eyebrow lift....

Wordless Wednesday

PRAISE THE LORD

I think fever has left her little body. Thank you Jesus. She woke up fairly grumpy this morning, BUT-she got a full strength, half volume feeding last night WITHOUT pukage. Today she has had a full strength half volume feeding WITHOUT vomitous.....AND she has her PMV on. These are some pics I took of her this morning and she was not smiling at me when I was taking the pics, just in between---rotten. I think I was really just getting on her nerves.

BTW- she and I were in the bathroom this morning and she picked up a stick of deodorant that fell on the floor and acted like she was putting it on....I am just so amazed. Do all two year olds know where deodorant goes??? Tickles me to death.

PS- sorry for my made up vocabulary, but that's how I roll :)

The Verdict is in

We just got back from the pediatrician and he believes it is related to her ears. I thought her fever had broken at four this morning, but it was back with avengance by eight or so. Right now, she is crying and sitting in a chair trying not to throw up. They gave her a shot and we will take her back Wednesday for another shot. We are supposed to keep doing the ear drops, trouble is knowing if the drops are actually reaching the trouble spots in the tubes.

He did have a look at her mouth and he was so impressed. He said it was one of the best palate repairs he'd ever seen.

Gotta go, she is supremely unhappy right now. She needs her Mamma!

Better but still feverish

Keep those prayers a-comin! Seriously, thank you all so much for the prayer. It just gives my heart peace. Lillian is still running around 102 and that's with tylenol and ibuprofen on board around the clock. She woke up in a bed of vomit this morning...(such a good mother) that I apparently did not wake up to. It obviously didn't disturb her or she'd have waken me...or I'm just a really bad mother and she cried herself to sleep. At any rate, she is still only getting pedialyte to "eat". Maybe tomorrow the fever will break. So far, no other symptoms are presenting themselves clearly.

104 is a good number if you're talking about money..

Not, however, if you are talking about the degree of a fever that has been going on for over 24 hours. Upon phone conversation with physicians...it has been decided that as long as there are no signs of respiratory distress we will just continue to treat the fever and try to get her through Monday. We do not like ER visits. We shall avoid them at all costs. Please pray that this fever subsides and we make it through the weekend without a ER visit. She is absolutely miserable. This of course means no real feedings either. It will be pedialyte only until the fever backs down.

It's 2:15am

Lillian spiked a high fever earlier this evening. I noticed her sitting strangely quiet in her chair during her breathing treatment. When I picked her up she was roasting. I gave her ibuprofen and she laid around for the rest of the night. She fell asleep around eleven, and now here I am having cleaned up her puky sheets and switching out the feeding for pedialyte. Here I am wondering...is this her ears, is this related to the surgery, is this some other virus....is she infected from some bubble drinking...
I was sitting by her side waiting for her to fall back into sleep wondering...wondering if her stares were seizures or just the sleepiness you fall into before you go to sleep. If her jerky movements are because she's chilling or something else is going on. Oh, LORD, how the fears creep in. I wonder, how long can a little body handle so much before it can take no more. I sit here wondering.

Lord continue to hold her in your arms, give her rest and healing. Give me peace.

Back with Peace of MInd

I don't know if I feel so peaceful bc the surgery is over or because I really like the surgeon. He is just awesome. He said her mouth looked good and he would see her again in three months unless there are problems. He is connecting us with a pulmonologist, cardiologist, and ENT for the time being (which his scheduler is handling for us) so we can get to taking this trach out. He is very concerned with getting her speech and feedings moving. He keeps saying she is missing prime developmental time for these things. He evaluated her brachial plexus injury and said at this point, therapy is the best scenario, any intervention would really just torture her and be of no more benefit.

This JUST IN---she just successfully sucked out of a straw!!! WOOO HOOO!!

Decann here we come....

KY here we come...again

Tomorrow Lillian goes to her follow up appointment with the surgeon.

Thank you so much for praying, her feedings seem to be improving. We are not up to full feeds, but I believe we are making some headway. I thought the same thing yesterday and then at seven she puked the motherload. The nights have been kind of bad from an equipment standpoint, but I guess that's just par for the course. The house is slowly getting boxed up so now we live in a maze.....I can't wait to get that over with. Will remember to update tomorrow.

I hate to be so descriptive

Well, not really....that smell, the one I keep saying is coming from my fair child's mouth/nose. The smell that I can only compare to like a dead critter smell, sorry...but it's true. It's normal. That is truly disturbing to me. It doesn't seem possible that a living breathing person should have that emminating from their body. ugh.



Puking continues and since I started this post last night, today I'm feeling freshly discouraged. I should not complain, there are so many "worse" things that could be happening, but my goodness, she does need nutrition to be able to heal and grow and get healthy. I cannot understand why we are having this never ending pukefest. Is this a part of chromosome problems and why does it happen in waves??? I'm so burdened. A day has not gone by since mid march that she has not puked at every bolus feeding. I want to cry, I want to be upset, I want to lash out.....ITS NOT FAIR FOR HER. Hasn't she been through enough. She's GOT to be tired and I know I am. I'm not talking spit up here, I'm talking full on vomit til its gone.



On a slightly less depressing note....she is having so much fun today throwing new bags of socks all around the living room. What a nut.

No pain meds, you know the good ones...

We officially ran out of pain meds for Lillian last night. I gave her the last dose at like two or three this morning. The smell is still there. I did call the surgeon today just to check if that was normal and am waiting to hear back. She seems to be doing well overall except for the dreaded feeds. Ugh....it wears me down, seriously, I cannot even imagine the toll it has on her. I hate to puke...I cannot imagine puking EVERY SINGLE time I ate. blech

Interesting enough, got a letter in the mail today from Riley surgery notifying me that her surgeon would be out of town the week following her surgery and if that concerned us we should call their office to reschedule....are you kidding me??? I took this opportunity to call and tell them we were no longer in need of their service.

She is completely obsessed with going outside. She thinks she should be out there if anyone is out there. Let me tell you how much that annoys the girls. They have a little tolerance for messing with her outside, but it quickly runs into "their" time. I took little missy for a walk today and we went to see the goats, but they were not in the field. (friendliest bunch of goats you've ever seen)

Another new experience today, Lillian pulled the Wizard of Oz DVD out of a box and kept shaking it at me and pointing to the TV. I put it in, quite shocked bc she is really not too much a tv watcher. She did get interested in it, as much as a two year old is anyway. Then tonight, she did it to me again...I said are you serious??? She shook her head yes at me very slowly several times as if to say, did I stutter??? It was funny.

I spoke to a friend who is a speech path today and she told me that most kids have to have multiple surgeries on the palate....UGH.....that was depressing information. Sometimes I wish they would just tell us these things up front so I'm aware of it. So it doesn't feel like a bomb landing on me. I have felt like that many times with her. For instance, the time she had blood come out of her trach...I was buggin'. When I called they were like so nonchalant, oh yeah, that's normal. Don't you think you might ought to tell a parent, that someday blood may come out of her trach...it's not a big deal, it's expected...do they tell you that in training....NOOOOOOO.

I feel heavy hearted today. One day at a time...

hmmm

I'd like to say things are going fabulous, but they are not, don't get me wrong she's not horrible or anything, or maybe I just don't know what's "normal".

It has become evident that pain medicine only holds her through the night for about four hours. Every night she wakens just before three crying and usually bleeding and it takes me a good hour to get her back to sleep. Her feedings are going HORR-IBLE. Yesterday, I just went straight to pedialyte. Today, we are trying to cut down her volume and slowly slowly slowly work back up. The smell coming from her is atrocious, Matt says it's my bionic nose.....but the kids smell it too. Oh, well, vomit + blood + mouth bacteria= nasty nasty smell. What should I expect. Holla back if you have ANY experience in this avenue. Any long lasting crying/coughing/vomiting causes bleeding. We assume this is from the existing hole. I was going to show the drawings on here, but I can't seem to find what I did with them.

So, the hospital experience....I couldn't really give you any specifics of comparisons, except they validate parking...lol. The nurses we had experience with were extremely kind. There were difference with treatments and such and I think they are a little farther along on computerized charting. They had alot more going on in the evening hours for kids and you NEVER see that at Riley. We had a child life specialist come see her in the evening hours. And, have I mentioned that I enjoyed not talking to this student and that student and so on and so on. When I told them what formula Lillian was on, they didn't blink an eye....(Riley had some trouble with that and they are the ones who ordered it for her) They had her meds, oral nexium (which I was told is not available at Riley) The only bad thing I can really come up with, is they weren't very quick to call lights. I mean they answered right away, but sometimes it would take some time for the nurse to come. That will be on my survey as the only negative. I'm not sure, but I think all their rooms are private. WITH Bathrooms! It will be interesting to see how things evolve as we explore this new environment. ANY time a lead came off or a monitor alarmed they called into the room. This was nice but did become annoying at times. Though I don't know that it's altogether a negative experience. Parents are also able to purchase meal tickets in the gift shop and are able to get items off the "munch mobile" when it comes to the floors. They were also ready/willing and able when I wanted someone to sit with her a minute to get some lunch. (she's an onery girl taking out her IV and pulling off her splints, a bad thing when you want nothing in her mouth) Bottom line, I'm happy and feeling more confident each day in our decision.

I'm a sick woman....

Ok, I should officially be considered MOTY bc I thought it was funny how my child reacted when placed on versed...and sickest yet, I'm posting it for everyone to see. I'll apologize now because I am not smart enough to get it turned the right way...it was a cell phone video. This video is still not as funny as she was in the beginning. She was smiling and seeing the purple elephants....FUNNY.

This is a picture of her....

This is what you see when you come off the elevator and I didn't realize it (probably bc I was a nervous wreck and I only had two hours sleep) but the pastor pointed out her name on the board.


To give a brief synopsis, I did like the hospital, I felt the doctor was extremely caring. I liked not having to deal with 10 different residents/students before we actually got down to brass tacs. Don't get me wrong, it was different...a lot different from a nursing care standpoint....but I'm very comfortable moving her care there. She was in a private room in a quite quad and all the nurses were very caring. I feel we are and have made the right decisions. Now, the road to decannulation begins!!!

Today, Lillian has been pretty fussy off and on, but overall doing well.

Thank you for continued prayer and support!!

There's no place like home

We've clicked our ruby slippers and we're home and happy. Last night about midnight she really woke up and was acting much better. Today, she is almost back to herself. You can tell it hurts her to cough...imagine that. This is also the first time she's experienced barfing without it coming up her nose. She is acting very tired, I think she might just have over done it a little today...

The nurse came in the morning and removed her dressing, which wasn't terribly pleasant, but not as bad as I thought it would be. She has some bleeding afterward but not too much. They wanted us to stay for the day to make sure no more started. The doctor was so concerned, he came back and made a special visit to see her today bc he said he just couldn't get her off his mind. His nurse also called every two hours to check on her.

She, of course, charmed EVERYONE today.

There is more to tell, but I've literally only been home about half an hour. I'll post more later and also share our versed video and a drawing for some understanding of the hole in her mouth.

Today was my Grandma's funeral that I was not able to attend and I just need some time to process and grieve, but I think that is on the backburner for the time. Thank you for all your comments and ecspecially your prayers!!!

P-day

Oh my goodness. It has been a difficult day. The surgery went pretty well as expected. Her ears looked fine too. They were not able to close the entire palate, so there is a small whole inside under sewn tissue (diificult to explain) that is oozing. She came up from surgery, swollen like I was not expecting. She is in a great deal of pain and was bleeding quite a bit more than anticipated. The doctor would like to keep her as calm and pain controlled as possible.

PTL this surgery is done, but oh, my poor baby is miserable.

I will tell you, I did allow them to give her versed to calm her before taking her back and friends, that was darn right hilarious. She was definitely trippin'. I will have a video to come....

We wound up having to be here even earlier than we expected so I got a grand total of two and half hours sleep. It is a little scary to be here since they aren't familiar with her, but so far I think she is in capable hands.

I feel it will be a long night. Thank you for your continued prayers and support.

T minus 1 to P-day

Tomorrow is the big day. Today we make a trip to the Ped. to make sure she is all clear from a respiratory status. Much left to do to prepare. I probably won't be able to post again until I return home.

To complicate things just a tiny bit, my Grandmother passed away Sunday morning, please pray for our family. This was a very unexpected loss and will be hard on the family.

One day and the steps to decannulation begin. My nerves are shot.

Do you think? 3 Days

Do you think if I don't write about the fact that Lillian spiked a fever two nights ago that it won't matter??? Do you think if I don't write that she puked her entire last feeding that it won't make a difference? Um-no, notsomuch, but it did. I truly believe this is all linked to her ears or perhaps teething?? *wink wink* Let's just go with that shall we?

The KY trip was fine. We actually spent more time driving there and back than the actual appt. They basically asked history and were very concerned with getting her last cardiology report. Everyone there was uber-friendly, my sister thinks it was just good old southern hospitality. Maybe...or maybe they just care. The surgery waiting room was PACKED. I could not believe it and I SO did not want to have to sit in there with Lil, but I didn't have a choice. They said it was unusually busy for them that day. I doubt there will be that many on surgery day, let's call it P-day just for fun. Get it? On P-day we have to be there at 0630, translates to leaving our house at o'dark hundred. Believe it or not, I think we actually have everything lined up for the girls. Have I mentioned I have super good friends? I just need to get a lasagna made for supper that night. I will be spending the night there with her and they are going to try to pull and ENT into the surgery to take a look at those ear tubes. Fingers crossed. 3 Days. 3 short days. This most pleasant visit also makes me feel really good about transferring her care. I need to do some research into getting that going as well.

Our move is officially official. We are in need of some financial blessings in that respect as well, so if you could remember that in your prayers I'd really appreciate it.

Thank you for you prayers and comments, it really means a lot to me.

In the Little Room....5 Days

Tomorrow we head to KY for a preop visit with anesthesia. Never been to one of those before, so it will be a new experience. I hope they don't need anything besides my brain power. (That makes me laugh just typing and rereading it.) My sleep is fitful and full of dreams of surgery. Not necessarily bad dreams just unorganized surgery dreams. Hmph. Last night I couldn't help but think back to the beginning. Some days it feels like nothing really has changed. Still waiting and watching.

It has been my experience, having worked in healthcare, that it is never "good" to be taken to the little room. You know, the room where they take a family in the ER when a patient has died or the news is so grave they want you isolated. It's the same way in the NICU. They encourage you, or they did us at least, to keep a diary of our stay there. While I am a journal-er, I just couldn't bring myself to rehash everything in my room alone each night. I didn't want to be able to go back and look on paper how distraught I was. How alone. So, instead, I wrote letters to Lillian. I'm a little unsure about sharing this, but hey, take a leap....here is the letter I wrote the day things started taking a talespin.

Shorty after she returned from the sleep study, she began to show signs of distress, by seven or eight oclock she was back on a vent and still teetering. Matt and I stayed with her until a relatively good blood gas came back. It was the first night I went home. Although they procured a room for me, I just could not bear the thought of staying alone. Coming home, how painful. The first time to step into her room that my sister and kids lovingly prepared. The emotion of wondering if Lillian would ever even get to enjoy her sweet little bassinet and all her precious clothes neatly folded in her drawer or wear the diapers that lay stacked in the diaper stacker. It was just overwhelmingly difficult. We headed back up to Riley the next day only to be met at the bedside by the doctors telling us we needed to "sit down and talk". Enter, the little room. I so clearly remember the team-head doc, nurse practitioner, social worker, Lillian's nurse and maybe two other people. It is true what they say about hearing a pin drop. Everyone sat quietly as the doctor unloaded the situation. It was like air raid sirens. Like the bombs dropping one at a time. Initially I tried to write things down, but soon was just too overcome. I kept looking from the doctor to Matt. I remember there were few words afterwards...like "what can we do to help you" and "do you have any questions" and then they all filed out so quickly it was almost like a cartoon. We were alone and I think it was a moment before I realized Matt was crying with his head in his hands. We took turns like that for some time. Trying to fathom how we would talk to the kids and just soaking in everything we had heard, heart surgery, tracheostomy, mortality rate....chromosome problems. I'm not sure how long we were in the little room. I guess it was a while. The next thing I know the nurse was back saying our pastor was there and as he entered we were freshly overcome. It was the man who had helped save our marriage and been there for us and continues to be there for us today, although we attend a different church. I think we told him what we knew and the first thing he did was open his Bible to Psalms 139 and he read to us. He prayed with us and comforted us in the little room. It was after he left that we were able to pull ourselves together to face what would come. A lot of things happened in the little room and I don't think I'll ever forget the little room.

Five more days and hopefully a lifetime of no more of the little room.

PS- puking continues, but some better.

How dare you cross your legs...6 Days

7 Days

Hello, yes, I'm having surgery in 1 week, can you believe it? I know. Gotta go, toys to throw around...sisters to annoy. Bye!

8 Days

8 Days and I'm scared. I'm anxious. I'm irrationally scared.

Palate repair means so much. I know it isn't a "major" thing such as heart surgery or brain surgery or something of that magnitude, but it doesn't help me to not be afraid. I do believe I've had quite enough of surgeries. I'm concerned that there are issues that will need further attention. Not to mention I've taken this crazy leap out of my comfort zone from the hospital I'm so familiar with into a place I've never even been before. I'm worried and I pray. Casting my cares upon my Lord. I guess I must not really give it to him or these feelings wouldn't remain.

I guess, though, that I'm probably "normal" (notice I put that word in quotes, as it is objectional) in my feelings as noone should ever have a comfort level with placing their child in the position of letting there child's breathing be controlled by a machine. That with surgery there are always inherent risks.

8 days and the wind of change begins.

10 days

Why is my Daddy mowing the grass without me????

11 Days

Passed out from her day of company.

12 Days

Here is a pretty blurry picture of Lillian doing a new skill we like to call kissy lips. Its the first time we've been able to get her to mimick putting her lips together.

Updates ----

Lillian's weight wasn't as bad as I thought it would be. She's at 21lbs. PTL. He's changing her prevacid to nexium, so we'll see how that goes.

Stupid Medicaid lost her paperwork AGAIN and I have to take her back in there to give them the documents for the THIRD time. You, know, she needs this additional insurance. I'm so disturbed that they've lost her birth certificate I don't know what to do or who to complain to.

She was quite the stinker during her therapies today. Not being cooperative and such. Rotten. God bless our DT. She brought me Rally's for lunch. I LOVE her for being so good to me!!I should just give her a 20.00 and see if she'll bring me lunch every Wednesday....what do you think Shelley???(btw, we forgot all about them wings.

I got her some interactive story book CD's on ebay and they came today, but it wasn't exactly what I was looking for. They are cute, but they won't go full screen and they are not as good as some of the other ones I've seen. I'm not sure how else to search them.....anybody else know what I'm talking about??

I thought I had a lot more to share, but right now my mind is just busy with so many things. So, I'll finish with this.....13 days to go....

Another peep who didn't make the last photo

14 Days

Lillian and her Peeps

15 days

16 Days

Fingers crossed, prayers lifted. I believe my plan of action is to take Lillian to the doctor tomorrow. Start her on any and all preventative medicactions, such as toby, ear drops, and anything else the Doctor will consent to. She needs this surgery desperately. Last night I had to turn up her oxygen. I don't know if she's got some plugs moving around in there because she seemed to be fluctuating a lot. She's napping right now and I have her hooked up to her monitor and she's holding a solid 93. Coughing continues which I think insights most of the puking, but not always. I almost hate to know what her weight is. Good bye 23 lbs. I know that for sure.

*breathes deeply*

Dear Lord, please place your all encompassing hands on Lillian's little body. Give her strength and good health to be able to endure her coming surgery. I know You and You alone can grant all these things I ask. Your faithful servant.....

WHY won't this PUKING stop????

Puke-fest continues at the Halcomb home. I just don't know what to do.....I guess I should be uber concerned, but since this is something we've dealt with from the get go, I'm not.

She is in a great mood and doesn't seem like she feels bad at all. We have had to throw in a few duo-nebs and have started giving her ear drops again, (although i don't know how much good they do) So frustrating. She had done so well before this last hospitalization. I will say, however, that she is not throwing up at all with her night drip. It's just so darn hard.

#1 Reason to NOT let your child play with diaper wipes...

Yeah, it's not pretty.

I go in the kitchen to get Lillian's eleven oclock feeding, leaving her in the living room finishing her breathing treatment. When I return to LR I get the faint smell of poop and think oh man, she must have pooped again (having just changed a stinky dipey) only to find Miss Thing ----

**********WARNING********WARNING*************WARNING************
the following information may possibly gag weak stomached readers


chewing on a diaper wipe. Upon closer examination (conjuring previous smell into memory) I realize she has, somehow, gotten her hands on dirty dipey and is chewing/sucking on poopy diaper wipe. *pauses for gagging*

Now-I ask you- how you gonna get poop out of mouth, can't very well wash it out???? *gags some more*

*shakes head and blechs*

Aren't you glad for once I didn't take pics of this lovely occurence? UM no, the camera not at the fore front of my brain in those exact moments....

So, onto infinitely nicer topics...yesterday during Lillian's developmental therapy and today during speech when given to choices of animals on flash cards, Lillian repeatedly chooses the right animals over and over again!! (different animals of course) It was TOTALLY awesome. There has been/is so much fear deep within me about the capabilities Lillian will hold from a developmental standpoint and to see her doing things that are "normal" as well as improved is just a feeling I can' t even describe. You know how it feels when your babies start to walk or that excitement of potty training? Multiply that by about a billion. Indescribable!!

Recapping

Lillian has palate repair surgery coming up on May 19. We will also have to travel down to Louisville on the 15th for a preop visit with anesthesia. I am more than ready...but still somewhat anxious. Surgery is never one of those things you really look forward to if you know what I mean. Today, Lillian's nose is draining big time and while part of me is like---oh well it's probably allergies, another part of me is thinking here we go again. *sighs* Better start up the claritin again. And (i know you aren't supposed to start a sentence that way-but hey, this is my blog and I'll AND if I want to..lol) small attempt at a joke... don't even get me started about the swine flu epidemic. Seriously, I feel like she is really at risk. AND and I'm really irritated at the news reports and government (I mean you Mr. President) about the whole thing right now. I mean, I would just hate for Lillian to go through this year without yet another strain of the flu virus......NOT.

In other health reports, Lillian will be having her Urology appointment to follow up on her reflux in the kidneys. She will have a VCUG as well as an renal ultrasound coming up in June as well as seeing her cardiologist in June to follow up with her remaining heart hole. Oh yes, and my favorite one of all Developmental Peds in June. We revisit pulmonary in May and I was supposed to take her to the pediatrician this week for hospital discharge follow up, but it is not happening I think. All of these dates subject to change due to KY trip where I will make the final decision about moving her care there. Oh by the way- did I mention we are moving in June and Bethany has a birthday in June?? Let's see, I never rescheduled her genetics appt. What's the point, its for them, not us and although I really like the doctor, I never feel really good after leaving that office. I also have to reschedule her opthamology appt bc she missed that while in her last hospital stay. IF, her reflux is still present in her kidney, she will have to have surgical repair for that as well. Goodness, just writing it all out makes me nauseous.

Look up overwhelmed in the dictionary, pretty sure it has my picture and phone number.

Therapy wise, there are many decisions to be made soon. She will age out of First Steps when she is three so trying to transition everything right now. Our upcoming move is complicating those matter as well. We'll have to take on some new therapists, say goodbye to some current ones (whom she's had her whole life basically) and then decide if I want her in a developmental preschool program....GAHHHHHH.

Oh yes, and there's just a little matter of four other girls to transition to new schools and new house and figure out where they will go when the surgery happens and the list goes on and on.

Wonder why my house is messy?? Reread from the top.

*insert serenity prayer here*

I think that just about covers most things as far as Lillian is concerned.

Photo Shoot-NOT

This is what you call non-cooperative.

I like this one because I LOVE profile shots, but I was still trying to get her to look at me and smile.(take note of my goose, I always wanted a goose for my front porch, now she just needs more wardrobe)This is her getting tired of me bugging her and wanting to see what's going on in the 'hoodThis one is a total bust-except...Look how darn cute her little pony tail curled up...This is me, giving up and going back into the house with her.

New Loves

So Lillian has some new obsessions...voca people, picking flowers and smelling them.

My mom sent this to me and Lillian makes me play it over and over and over again....so funny, I guess I know where she gets it. The apple don't fall far from the tree!

Still Vomiting

Lillian is still puking off and on with her feedings which is quite discouraging, but she is still in a great mood. I believe her ears need to be debrieded (sp) as they were last year. They went in and suctioned out the tubes (which was terribly unpleasant) but it made some difference. I believe that is why the puking lingers on.

I went back through re-reading some posts talking about what I miss, I hope it is a given that I miss my family terribly when I'm gone, though I don't always mention it. I wonder how my girls are doing, if they are coping with all this ok. Kids take things so easily in stride, it's difficult to tell how they process everything internally. Generally, I try not to think about not having my husband and kids around everyday as we wait it out at Hotel Riley. Just another issue that goes with the territory.

Today we managed to all go out for lunch which is a major feat. It is rare for us to do such a thing and it turned out very ejoyable. The weather is lovely and Lillian has been outside off and on all day. She loves to pick the flowers and smell them and make us smell them. Yesterday her nostrils were all yellow from sniffing dandelions. Photo op missed...but it was adorable.

Hope everyone is enjoying this lovely day!

In My Womb

In My Womb
Began your life
A token of love
Between husband and wife

In my womb
You formed and grew
What lie ahead
Noone knew

In my womb
Safe, nestled, and warm
Days passed by waiting
For you in my arm

In my womb
No battles to fight
No struggles for you
You were alright

In my womb
Is the very place
I wanted you back
When we met face to face

In my womb
You were no more
The fear settled in
The guilt to my core

In my womb
The silence cried
It seemed as though
A part of me died

In my womb
God made a home
For a blessed angel
On this Earth to roam

In my womb
His work not done
He sent you along
So I'd rely on the Son

In my womb
The journey did start
I'll never regret it
You have my heart

In my womb
Began your life
A token of love
Between husband and wife.


Michelle Halcomb 4/23/09

Glad to be home

Lillian is still vomiting off and on, however I do believe her cough is improving some. Matt returned to work today, he stayed home yesterday to help me as Lillian thought it would be a good idea to stay awake several hours through the wee hours of morning. I think there is adjustment to be made because it's dark here and she finally gets adapted to sleeping at the hospital with all the light. Last night was better, but she was up at four, ugh. This did not deter her from waking at eight this morning. It wouldn't be so bad if I got in bed at a decent hour, but I stay up pretty late to give a late breathing treatment. If you know me at all, I'm one of those people that needs more sleep than less. It's never good for me to not get sleep, I eventually wind up sick (which I am now) I digress...enough about me...how'd I get on that tangent...lol. Aside from her lingering virus, she is so happy to be home. She is just eating Matt up. It is obvious that she missed him. She is dying to wander around the house and get into everything. It is so heart warming to see that sparkle in her eyes and know she is feeling better. Hmm, maybe that is a rotten streak I speak of???

Welcome Home

Lillian is still coughing something fierce, still puking a lot, still needing some oxygen, but at least she's home. Her preliminary tests for her immune system are normal at this point. I hope this the end of our ten day stays at Hotel Riley.

I'm waiting for you my sweet bed spring!

Maybe home tomorrow

Today we are trying to wean Lillian from oxygen and maybe she'll get to go home tomorrow. She is still vomiting, but we can deal with that. I don't mind telling you i'm a little tired of talking to ten different doctors a day (ok, maybe not that many) but just sick of having to deal with them AND my daughter being the guinea pig for all the students/orientees. She is one of kind and usually the only trach kid on the floor so they all want to "work" with her. I'm ready to fly this coop.

Dear Lillian

Dear Sweet Girl,

I'm sitting at home with your sisters while Daddy has a visit with you at the hospital. I thought being home would bring me more rest, but alas it did not, but that's ok. I hope if you someday understand my words and wonder why I always say I'm tired you'll never feel bad. I wouldn't trade any moment of this journey with you for any amount of sleep in the world. Your precious life has brought me to places in my life that I never imagined. Joy, thanksgiving, trust, and faith. Though the valley's of your life will be memorable, the mountains will always be the best. One little squeeze from your tiny arms makes every moment of my weariness disappear. Nothing could ever make me tired of being with you or caring for you. I love you so much which reminds me of how much our Father must love us. You are a constant reminder to me of His promises, His life, and His love. I love you so much. Mommy

I wish I could say

It's been a better night/day...but it hasn't

That Lillian slept all night but she was awake ALL night

That she is not sitting in her bed crying bc I left the room bc I'm hungry, tired, and just need to be free of the room

That her vomiting has stopped, but it hasn't

That McDonalds was the best food in the world.

That I was strong and should just be positive instead of so broken down

What I can say? Her cough is some better.

I'm going home for the night while Matt takes over here one night.

Hacking Cough part 2

So, last night was atrocious. Lillian did not get any rest nor did I and I also found out that she was NOT getting every four hour treatments. HELLOOOO? In what land are we in? So, someone changed the order, didn't tell me and now she is in misery. Yesterday was rocky waters and it continued into the night and has flowed into today. For a brief moment this morning, I thought my next post might have come from the local jail....I guess they would arrest me had I smacked that doctor silly this morning. When I was expressing my concern about the treatment her response was "that's no big deal" Perhaps not the right word-age for the very concerned very sleep deprived Mother. Remember that cartoon about the weed and the flower? That's all I'm saying. So, no sleep for me, no rest for her, my throat is sore and oh yeah, she's back to almost a 102 temp. Her treatments have now been changed to every three hours at my insistance and it would be nice if she could keep her food down, but who could when you are hacking out a lung?

Not a good day

Lillian has had a rough day filled with coughing/puking episodes. She took a bit of a nose dive today and is now requiring oxygen. Xray was fine. They drew blood today to check her antibodies to explore possible immunity issues. It has been a crap day, I have a headache.

UGH UGH UGH

You can imagine from that title I don't have good news to share. Lillian's blood cultures are positive for a strep pnuemo infection which will require 10 days of IV antibiotics. Hopefully they will count the previous three days and she will only have 7 left unless the infection does not respond the the meds. GAHHHH

Holding the Course

Lillian continues to run fevers and they are re-doing blood cultures today. She's been up around the room off and on, but is pretty weak. Her cough is nasty and she was coughing up some blood this morning out of the trach.

Have I mentioned that I'm weary of this cycle?

I miss you bed spring.

Blood cultures

Lillian's blood cultures are positive so they are starting some Vanc today. They will probably redraw in a day or so. She is still running fevers and very unhappy. She is probably having a melt down as we speak. She cannot stand for me to leave her. Yes, we are staying at Hotel Riley again for those a-wondering. She has still been unable to tolerate a normal feeding.