Maybe some drugs are working

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

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

Complete

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

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

A little visit with Pulmonolgy

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

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

Walk in the park

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

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

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

Running

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

This is Therapy, right?

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

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

"MY BED"

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

Saturday Sillies and ENT update

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

Gnomeo and Juliet

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

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

Just Cute

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

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

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

"I like Steak and Shake"

This cup is bigger than her...almost.

Cute as can be

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

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

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

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



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

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

Miss Personality

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

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

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

Something I want to share

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