Monday, December 7, 2009
Friday, November 20, 2009
Monday, November 16, 2009
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!!
Thursday, November 5, 2009
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.
Friday, October 23, 2009
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.
Wednesday, October 14, 2009
Monday, October 12, 2009
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.
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
Saturday, October 10, 2009
Tuesday, October 6, 2009
Monday, October 5, 2009
Thursday, October 1, 2009
Wednesday, September 30, 2009
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.
Monday, September 28, 2009
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!!
Saturday, September 26, 2009
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.
Monday, September 21, 2009
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.
Tuesday, September 8, 2009
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.
Thursday, September 3, 2009
Monday, August 31, 2009
Friday, August 28, 2009
Thursday, August 27, 2009
Wednesday, August 26, 2009
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?
Tuesday, August 25, 2009
Saturday, August 22, 2009
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*
Wednesday, August 19, 2009
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.
Tuesday, August 18, 2009
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.
Wednesday, August 12, 2009
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.
Saturday, August 8, 2009
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.
Friday, July 24, 2009
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.
Wednesday, July 15, 2009
Monday, July 13, 2009
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!
Friday, June 19, 2009
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.
Tuesday, June 9, 2009
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 :)
Monday, June 8, 2009
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!
Sunday, June 7, 2009
Saturday, June 6, 2009
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.
Wednesday, June 3, 2009
This JUST IN---she just successfully sucked out of a straw!!! WOOO HOOO!!
Decann here we come....
Tuesday, June 2, 2009
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.
Thursday, May 28, 2009
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.
Tuesday, May 26, 2009
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...
Saturday, May 23, 2009
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.
Thursday, May 21, 2009
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!!!
Wednesday, May 20, 2009
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!!!
Tuesday, May 19, 2009
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.
Monday, May 18, 2009
Saturday, May 16, 2009
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.
Thursday, May 14, 2009
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.
Tuesday, May 12, 2009
Monday, May 11, 2009
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.
Saturday, May 9, 2009
Thursday, May 7, 2009
Wednesday, May 6, 2009
Another peep who didn't make the last photo
Sunday, May 3, 2009
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.....
Saturday, May 2, 2009
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.
Thursday, April 30, 2009
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 ----
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
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
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
Saturday, April 25, 2009
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
Began your life
A token of love
Between husband and wife
In my womb
You formed and grew
What lie ahead
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
Tuesday, April 21, 2009
I'm waiting for you my sweet bed spring!
Monday, April 20, 2009
Saturday, April 18, 2009
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
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
Wednesday, April 15, 2009
Tuesday, April 14, 2009
Have I mentioned that I'm weary of this cycle?
I miss you bed spring.
Monday, April 13, 2009
Sunday, April 12, 2009
Saturday, April 11, 2009
Friday, April 10, 2009
Wednesday, April 8, 2009
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.