Thursday, April 30, 2009

#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!!

Wednesday, April 29, 2009

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.

Tuesday, April 28, 2009

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.










Monday, April 27, 2009

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!

Saturday, April 25, 2009

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!

Friday, April 24, 2009

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

Thursday, April 23, 2009

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???

Tuesday, April 21, 2009

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!

Monday, April 20, 2009

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.

Saturday, April 18, 2009

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

Friday, April 17, 2009

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.

Thursday, April 16, 2009

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?

Wednesday, April 15, 2009

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.

Tuesday, April 14, 2009

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.

Monday, April 13, 2009

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.

Sunday, April 12, 2009

More influenza

Lillian has tested positive for parainfluenza type 3. She had a HORR-IBLE night full of 104 degree temps and vomiting and now diarrhea. They are starting her on IV anitbiotics for her ears as they are pussey as ever. She was not able to tolerate her first feeding today, so back to pedialyte we go. Her trend is usually to look good and then tank after about two days, so that is what I'm hoping doesn't happen, BUT as this virus takes hold of her, I will not be surprised if she does. Her sats bounce around from 97 down to 92. We are a hop skip and jump away from O2. She is mighty unhappy as well. That's the story as I know it for now. Good old respiratory virus AGAIN.

Saturday, April 11, 2009

What a difference 8 hours can make

Lillian woke up at 5 this morning coughing and vomiting and has been wretching all day. She is miserable. She's running a fever and basically lethargic. We are headed to the pedicatrician to get their take and if admit is necessary maybe we can avert a Riley stay. Or go direct admit if possible. My bag is packed so I'm prepared. Say a prayer. She is breathing pretty hard as well. ugh.

Friday, April 10, 2009

Busy Morning

Lillian had a fabulous day. We had ST where she tried some news tastes and she also played on the computer some. Then it was off to school to make our copies. She was such a ham smiling and loving on the staff. I think they might be in love with her too. She got to play at Amy's desk but not before being scared to death by one of the very tall teachers. She's sometimes more afraid of men and this particular teacher was well over six feet tall and had a very deep voice. She got to crying and had one of those non-breathing/coughing/puking episodes. I wound up covered in vomit, and poor Amy---she jumped right in there with the burp rags, but it scared her to death. My buddy, Deb, was there to help out with the suction thank goodness. Woo, it was a busy morning. We made a visit to Isabelle's class and a visit with Rebecca's teacher. I swear I think we disrupt the whole school when we are there. All in all, Lillian had a fantastic day. Feedings are still going pretty well---and I am so thankful. I think her ears and greenies are clearing up which is all good. 0h-almost forgot-daddy took Lillian to the park and she had a ball.
video

Wednesday, April 8, 2009

OUUUUTTTTTT

video

Ok, I know this is dark and the best part was her face, but this is Lillian asking Maggie if she has to go out!! HILARIOUS!!

We've also found some new favorites around this house. She loves the movie Charlotte's Web. She fell asleep yesterday while Fern was singing to Wilbur. We've also found that she loves Grandma's mandoline. We took lunch to Grandma Monday and Lillian even got to "play" some mandoline. She was also doing the funniest thing to Grandma's cat. She was immitating Grandma trying to get Lucy, her cat, to play spider kitty. Too cute. It also didn't take long for her to get comfortable at Grandma's house to start wrecking it. Woowee this girl can get into things faster than I can blink. The other funny thing that she likes is the JG Wentorth commercial. I can't figure out how to post a youtube video here, but I would if I knew how. It is so funny, she will stop dead in her tracks whatever she is doing to watch it.

Tuesday, April 7, 2009

>>>>>>>>>MOTY ALERT>>>>>MOTY ALERT>>>>>>


Did I try to pull Lillian's pants out from under her feet so she wouldn't fall and wind up knocking her flat on her back? Was I trying to comfort her after her wretched PT session today and accidently bumped her face right into my chair arm? Um yes...so you see, I keep on keeping on with my impeccable mothering.Funny, I went back to a year ago in this diary and found out that we were having ear troubles this same time. Strange isn't it?

Welcome to my journey


I created this blog as a take off from Lillian's other web site. Follow her medical journey, her unfolding life, and God's unending love for His children. We never expected the way life would unfold for Lillian or for us when we were blessed to know we were having her. I created this journal initially in hopes of keeping family and friends informed about her progress. I also hoped our faith in God and the hope we have in Him would shine through this experience and be a witness to others. I've been blessed through blogger to meet other special needs Mom's and maybe this is a chance to reach out to someone else in the same situation. I invite you to join us on this walk, laugh with us, cry with us, pray with us as we continue down this unknown path God has placed before us.