Dr Lungs update and other good stuff

Lillian spent her very first over night away from Mommy at Grandma's this past weekend.  Course, two big sisters were along too, and she only really cried for me at bedtime.  It was entirely her idea and she basically ushered me out the door and slammed it behind me.  When I had to come back and drop off her car seat, she was none too happy to see me again already. lol.  Growing up.  It just so happened that the other two girls were off at camp.  It was the first time in seven years we have had a night alone with NO children.  So peculiar.

Today, Lillian has her quarterly appointment with Dr Lungs.  She will remain on her rotating antibiotic course.  Inhaled meds one month and a change to a different oral/gtube med on the off month.  It did bug me that her sats were just 94/95.  She used to always sat at 99/100 when she's healthy.  It made me wonder if it is a sign she is having diminished lung capacity.  94 is still a good number...I just rather it had been higher.  She will likely remain out of the classroom this fall due to her puny factor.  The one time this year I've exposed her to a small group of children, she got really sick.  ICK,

She is super excited about the baby on the way and loves kissing my baby bump.  She loves sorting through all his baby things and oohing and ahhing over everything.

It's been a long day, as always when we make a trip down south, I'm whooped.  Not really too much more to report, thank goodness.

Summer time

Lillian has been brewing something for about a week and about three days ago came to bed with a bloody ear.  It concerns me how much she has bloody ears, but what's a mother to do.  She has tubes, in tact.  Dang sinus issues.  I know that's how it always starts.  EVEN though she is on and has been on antibiotics constantly since January I think.  Anyway....she is very excited about the baby and no longer makes the gagging face when we talk about him.  Him, did you notice?  In case you are new here, after five little ladies, we are adding a baby boy.  Everyone is thrilled and Lillian is getting a huge kick out of the baby clothes that are coming in here and there.  Today, my mom dropped off a few things including a teeny tiny pair of shoes.  Lillian keeps picking them up and saying "aw" (she has the cutest way of saying it) and she kissed every side of the shoes. Too cute.  She loves kissing my belly and telling the belly that she is the best not Dad.  LOL.  In her way of course.  I've come to realize that most of her conversation comes out in frustrated sounding noises, but she's not really frustrated, it's just how she's communicating, even if she is just "saying" see you later.  It sounds very harsh.

One of my daughter's friend came by today and brought Lillian a tank dress from her vacation trip...she just adored it.  That girl loves her some dresses.

Lillian also got an invitation to her first little person birthday party.  I think it's the first time she's gotten an invite to a kid birthday party, but I'm not 100% sure. I sat here the other night contemplating the party..wishing Lillian could go...but it's a bouncy house party and with lots of other 3-4 year olds running around and older children  potentially...it's probably not the safest thing.  It made me sad.  The flip side, the Mom invited us to come the next day after the party bc they would still have the bouncy house the next day.  Warms my heart that she would extend the invitation bc she knows Lillian is fragile.

I'm a little disheartened that she isn't taking to eating like I hoped she would.  If you'd asked me three years ago if I thought she'd still be using a feeding tube for her source of nutrition, I would have thought no.  Now, at this point, I'm wondering if she'll ever be without it.  Only time will tell.  I've learned or am still learning on this journey that I can't take anything for granted or make assumptions.  Three years ago, I never thought she'd still be wearing diapers.  But, here we are.  She seems to have NO concept of when she pees and #2, well she can't even do that on her own with out medication.

Overall, we are kicking back and taking it easy for the summer, late nights right along with late mornings.  Course, we still have therapy to attend twice a week and the occasional dr appointment thrown in.  She is just a few months away from turning seven....wow, I can't even believe it.   By that time, she'll be a big sister. Even harder to comprehend.

Crushed by words

You know, I try not to be too sensitive about the things people say.  Usually when a stranger says something rude or inappropriate, I may get irritated, but it's easy to let it go.  It's harder when a loved one does it.  Recently I was in a gathering and one person said to another, "close your mouth you look like someone missing a chromosome" I was utterly shocked and felt like someone stabbed me in the chest.  Anger was not even a response.  I was crushed, the pain that struck me was close to unbearable. I had a little cry and pulled myself together.  I tear up now as I think of it again.  On my drive home, the words just kept bombarding me over and over in my head...I felt so totally crushed. That's the only way I can think of to describe it.  I'm not angry....just crushed.  I cried for more than half the drive home, holding back that sobbing cry...bc well, I was driving.  The sting of it is less, and I've spoken of it without tears, time to pray away the pain and be washed with the healing salve of Jesus.  And maybe cry about it for the last time.

Dancing Queen

This little girl had a ball last night.  We attended a lovely wedding and after the nuptials was some dinner and dancing.  She started out with a slow dance with daddy and mommy and then the party got started.  Not only did she boogie her little heart out, but oh did she enjoy dancing.  While this momma sat watching and sometimes hovering nearby holding my breath that she would not be knocked down or throttled across the floor.  I did do the chicken dance with her and all the video I took was very brief.  My pictures didn't turn out at all. On a side note, Isabelle was particularly happy that I am pregnant so I would not get on the dance floor and break out my moves...course, not one to miss a moment to embarrass a teenager, I broke out a few "signature" moves from my chair.  That was sufficient to put her in a tizzy.  It's good to be a Mom. ( Insert thriller laughter.  )

Anyway, here is a brief look at her partying down!

What I want vs what I have

Let me first say that every person who has a special needs child has a different walk.  So what may be an issue/concern/wish in our walk can be very different from someone else's.  I realize all of the things I have to be grateful for.  My daughter walks unassisted, yes clumsily at times, but walks.  I know this is a blessing.  It is however, sometimes frightening, at how easily her balance fails...how many times she falls and the injuries she sustains.  When you have a tiny, unpadded body, that's rough on a girl. I also HATE when she takes a blow to the head in a fall.  It is always very nasty and when you know your child is seizure prone and has some things in her brain that aren't normal anyway, you just don't want to see that happen.

I often wonder if there will come a day when we can go to a playground and I don't have to stand guard over the equipment bc of the drops or the other kids that just brush by her can cause her to go down one of those drops.

I want there to be a day when I don't have to explain to a restaurant cashier why my child doesn't/can't eat and that look of pity they give me when they feel so awkward after hearing why.

I want there to be a day when I'm not consumed by sanitizing carts and highchairs...and wondering if it's safe to put her in the midst of other children who may be sick.  Because you all know sick is not good for this girl.

I so clearly remember sitting in a a developmental pediatric doctor's office and her telling me that our world should not revolve around Lillian.  I have to just laugh out loud at such a ridiculous statement.  So much of my life has to be governed by what is best for her health. (especially when the pulmonary doctors are telling you to go into hiding OCT thru May bc of flu season)

You know she's never been to the zoo or the Children's museum?  You know why?  She's terrified of animals and the Children's museum, hello, talk about  kid germs.  I mean seriously these are things I have to consider. Even family functions cause me some level of stress just due to the possibility of sickness.

I'm ok with all of these things....she won't suffer from not spending time on a playground, she is able to be sat in a highchair and a cart...she enjoys food in her mouth even if she can't swallow it.  She's never been to a zoo or museum, and her life is not going to be altered bc of it.   This I know.

There are just times when the walk is hard.  I'm glad I don't carry the burdens alone.  Even though at times it seems lonely.
Today's thoughts from a crazy Mom, walking through life with my special girl.

What a week

Good grief, poor Lillian has had such a rough week going on a week and half.  A week ago friday, I spent the weekend doing round the clock treatments and she battled a stomach bug on top of that.  It seemed by Wednesday she was over the hump and I took her to therapy.  By that evening she seemed to decline, laying around...very whiney, SO not her norm.  I kept her home from school and therapy the next day hoping some extra sleep would do her good.  By Thursday night, she'd been asleep about an hour and projectile vomiting ensued along with a raging fever that nothing I gave her would break.  She spent the entire night vomiting roughly every 20-25 minutes and I had her on ice and was doing anything I could think of to keep her fever down.  I took her in to the pediatrician Friday and he thought it was likely viral.  She continued to run a fever and vomit most of the day Friday and on into Saturday. She had a small window Saturday of looking/acting better, but it quickly closed and she began to puke and be puny again.  Today, she seems much better.  I'm hoping she is over it.  I'm praying I don't get whatever it was...as I did get what she had earlier that week.  I have felt pretty well exhausted and generally bleck....but it has been a rough week.

Joyful Noises

Lillian is battling her "normal" sick issues.  I spent the weekend doing treatments around the clock. She is super duper winey today which is not at all in her character.  Antibiotics on board, so I hope she soon gets relief.

It was so fun to have her in the room as we had our last ultrasound.  She thoroughly enjoyed watching.    

So, why do I find myself here at this late hour typing away?  My mind refuses to rest as I linger on my thoughts earlier this evening.  We have had two choir concerts for the bigger girls this past week and they were quite enjoyable.  As I sat there, though, tonight in the audience.  I began to get very sobered as I thought of my youngest child...I wondered if I would someday enjoy the privelege of seeing her perform and sing her little heart out on the stage. I then fight the tears back and try to remember to be grateful for the sounds she IS making.  She does do some type of "singing".  Just not something I can understand because there aren't really any words.  But she is using a singing voice.  The tune is non recognizable, to me anyway.  It's strange the emotions I continue to experience as I walk through this life with my angel.


Maybe now, that I've shared my heart, my mind can find rest.  Good night.