We are still here

Just without a computer. This is the first time I've actually had time to come to the library and try to get a post up. Lillian is doing so well. She is happy and active. Problems continue with her ears...she continues to have ruptures even with tubes in. For her, a simple ear infection is a BIG deal. It causes her to have lightning high fevers at 104 and feeding intolerance and general discomfort. She is not the most stable walker in the world, so throw in some in ear problems and that really throws the sweet little baby for a loop. Other than slamming into a wall and splitting her head open...and being sick from nasty ears, she is doing well. I did place her into the prek special needs classroom and today at PT conferences I was relieved to hear how well she is doing. She transitioned wonderfully to the classroom and other 6 students and is loving it according to her teachers. She is astounding her speech therapist with her knowledge of testing she is giving her, which makes me feel so good. Due to car problems, I also had to put her on the school bus. This is a normal school bus outfitted for handicapped children and she only rides with kids in her class. It takes them longer to strap her in the seat then it actually takes them to drive to school from our house. (side note, we moved ,yet again, into town hopefully to never move again.) She seems to LOVE riding the bus.

We also had another genetic test done with doctors from KY. It came back with the same chromosome anomaly, but showed that she has a mosaic form of it. I would love to explain that, but I barely understood it myself. Have not even had a chance to google it. She also had another swallow study and video testing to see if she would be a candidate for and adenoidectomy to help with her ear and allergy issues. Unfortunately, she is not. The problems existing in her palate that hinder her speech would only further be exacerbated by removing her adenoids. It is like a vicious little circle...she can't speak bc there is too much space back there, she has very low tone in her mouth which hinders her speech and eating abilities. She is not old enough for further testing or prosthetic devices to help with all this. Not to mention, her poor ears constantly rupturing, which I'm sure inhibits hearing properly....follow that circle??? My heart has been so heavy bc I've longed to be able to talk with her and understand what she wants when she is trying to tell me something. I tell myself I should be accustomed to this road of ups and downs, but I never am. I just keep praying. I wish I could write more, but I have no desire to to have a break down in the library in a room full of strangers.

We are still waiting for results on her allergy testing and I'm sure we will be headed to the OR soon for new tubes.

Hopefully my computer will be back home soon, and I can get some pictures posted. Miss you all!

Who has a FOUR year old Girl??

Too bad Aunt Crystal chopped her head off

Great Grandma, Madeline, and Lillian

Grandman, Big C, and Lillian

Lillian and her Pillow pet

Me, me, me, I do. Although Lillian's birthday was on Thanksgiving, we had her celebration on Saturday, and for some reason that just feels more official. That is when we had the cake and the family over, so I guess that explains it. (seriously, why does a crazy woman try to justify herself...one never knows)

We had a great day, I made her a cake, which she actually got to really attempt to eat for the first time and for the first time, she seemed to really enjoy opening her gifts. Her favorites?? Well, her Grandma gave her a baby...Lillian named her "aayee" or something akin to what we think is Ally. We got her a baby that cries and sucks a bottle and "breathes" while it sleeps, BUT I believe the number one winner was a kid's broom and dustpan, she could hardly put it down, I knew she would love it. We had a nice day. Not sure if she really "gets" birthdays, but I think she had fun. I wish I could show you how she showed us all her clothes, each one she opened she held up with two hands (like you would do if you were holding it up and checking it out) then she would show each one of us the front and the back. It was absolutely joyful.

At one point in the day, I was sorting through some clothes someone brought me for her and I was making stacks on my rocking chair of summer and winter. Two minutes later, she was stacking her new clothes on her chair the same way that I was. It was adorable.

Many times I feel I lack in talking about her personality, well, let me tell you she is full of it. She is such a helper. She loves to help with anything going on in the house. She loves to put dishes away, put up groceries, dust, do laundry...anything. She will tease her favorite people that come over, and if more than one of them is in the house, she will go back and forth between them with a coy little smile. She is a happy little light that shines in our ugly world every day. She touches your heart and even those that are not fond of children can't help but be drawn in by her.

Today she went potty and she thinks she is something when she sits on that tiny little seat. Who knew there could be such pleasure in using the bathroom? Right now she is sitting at my feet tormenting Daddy with her broom and giggling incessantly...I wish you could hear, my four year old girl!!

Happy 4th birthday my precious gift

This is truly a bittersweet time of year for me. Don't misunderstand, I'm so grateful to have Lillian...and I wouldn't turn back the hands of time even if I could. It is wonderful to see her grow and do new things, but it also reminds me of those past days of sickness, stuggling to live, the fear and worry. I will try to just be grateful and not wonder about the future. I will be glad that hospitalizations have been minimal and nothing compared to those years we've already experienced. God is good, and we will celebrate his goodness, tomorrow...Thanksgiving and also Miss Lillian's birthday. It is hard to conceive that four years have gone by.

Dear Sweet Girl,

I love you so much, I'm so thankful for your smile and your love. I'm sorry when I'm impatient and don't understand what you want from me. I'm sorry when frustration over takes me. You and your sisters give me such great joy. I pray you continue to grow and learn and most of all walk in fellowship with Jesus, He loves us most of all. Happy Birthday, Lil' Bil, I look forward to another year. Mommy

News

Today Lillian had her kidney tests and they still showed reflux, which I found to be so disappointing. I know it can be fixed and will be, I was just disappointed. It will be a hard day, it had already been hard when I had to try to console her as they poked and prodded trying to insert a catheter. It's tiring. It is mind altering. I know, even as I read about a mother who has lost her sweet girl, that this is a small overcomable issue....but I still grieve it.

My internet is off for a while so I am using the public library. My dryer blew up Friday, so PTL for the nice warm weather He is sending to dry my clothes outside. One of our cars broke down Saturday which sent me on a midnight run to "rescue" my stranded husband, but PTL it was just a battery...it could have been worse. Isabelle had to have two teeth pulled unexpected on Thursday, and the end of last weeks insanity just seems to be rolling into this week.

At the moment, I'm struggling with the "grateful" attitude I know I should be having right now.

A date with the pediatrician

This morning we had a visit with Lillian's ped to talk about possible refluxing issues. Her ST thinks that may be what is causing her delay in speech and eating. After visiting with the good doctor, I think it may be years before we see her eating and possibly talking. Who knows. We are starting some prevacid again to see if that helps. I have been up numerous times each night repositioning her on her pillows bc she is coughing her poor little head off all night. At first I thought it was allergy, but after watching her in the mornings before she wakes, I believe she is refluxing. I HATE medicating....seems like the side effects are always worse than the help they offer...hopefully we will see some improvement in her sleeping over the next week.

We also discussed her vesicoureteral reflux (that hasn't been checked in a very long time) and he agreed we should do a VCUG and ultrasound to see how things are going in that arena.

I asked him about the possible glass in her knee and he thought it was probably not there anymore because he could not feel anything, he said there should be granulation tissue. Oddly enough, he told me glass doesn't show up on xray. SO- exactly what was that foreign body I saw with my very own eyes on that xray??? Very strange.

Her stoma site looks really good. The tissue there bugged her so much that she actually picked it all off. It was nasty, but it is gone now. She is now making the "p" sound with her lips, but not often. It is fun when things come out when I'm not expecting it.

We discussed her constipation issues again, I was starting to question if she might have some disorder that would cause her such trouble. He did not think so. Just have to stick with the miralax, suppositories, and prayer.

She is about the size of a 2 1/2 year old child, and is sitting in the 1 percentile on the chart...this just makes me giggle. He says her weight to height ration is good, so no worries there for now. With the chromosome issue, we have been told she will be small, so it is really no surprise. She has no fat on that tiny body...(wish I could say the same for myself...perhaps I could make a donation to her if need be, ya think?)

Here we are, almost 4 years old and I look back and can't believe the journey we have been on.

My cousin said it best today, blessed be the Lord.

Busy, busy, busy

Lillian has been doing pretty well. She has battled a small fever recently but it passed quickly and her health is good overall. She resumed speech therapy Monday and did well for her new therapist. We have started homeschooling and I have been negligent on keeping up on my blog family...I will promise to do better, just know I'm trying to catch up on everyone, but may not be commenting.

I continue to have ups and downs with Lillian's life as I'm sure I will always. It has been great to take her to the pool even though she is a WILD child. Her granulation tissue on her stoma site is larger than a pencil eraser, but the doctor doesn't want to do anything to it right now. She will see her in two months and we go from there. We have to continue to watch for signs for respiratory distress in case the same tissue is growing on the inside.

We are settling into a routine here at home and although it is challenging to be homeschooling, I love having the girls here and teaching them. Lillian likes to also sit at the table and "write" in a notebook as we work. She also has taken to ending our prayer time with a resounding AMEN. Precious.

I came across this poem during one of our lessons, and I struggled to hold back tears as I read it. It is so relevant to my life....

The Things God Has Planned

It's sometimes very difficult
For us to understand
The wisdom and the love behind
The things that God has planned.

But we wouldn't have the rainbow
If we didn't have the rain;
We wouldn't know the pleasure
If we never tasted pain.

We wouldn't love the sunrise
If we hadn't felt the night;
And we wouldn't know our weakness
If we handn't sensed God's might.

We couldn't have the springtime
Or the yellow daffodil
IF we hadn't first experienced
The winter's frosty chill.

And though the brilliant sunshine
Is something God had made
He knew too much could parch our souls
So He created shade.

So God's given us a balance:
Enough joys to keep us glad,
Enough tears to keep us humble
Enough good to balance bad.

And if you'll trust in Him you'll see
Though yesterday brought sorrow,
The clouds will part and dawn will bring
A happier tomorrow.

Author unknown

Pool Time again

Lillian got her first ride down the slide at the pool today. It was a dry slide until you got to the bottom. I was just too fearful for her to go it alone, I just think she'd fly right off the end. She just LOVED it. She came down with Bethany and started yelling immediately mo-mo-mo---she was so excited. There is a special kind of joy seeing her enjoy such simple things. After five "rides" down, I was afraid she was going to drown and we got ready to leave. It was such a fun day.

The only bad side to the day, for some reason, I'm burnt...crispy. I'm not sure I will function well tomorrow. OUCH!