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!

Cousin IT- not..lol

Funny or what? She was begging them to do that with their hair and glasses, what a goofy girl....

Just Trust.

Lillian's little granulation tissue is changing,not sure it I'll go so far as to say it's gone, but the ciprodex is making some change. I hesitate to say how great she is doing...she is doing so well. If we could just figure out the balance on this poop thing, it would be perfect. It just dawned on me tonight that my child no longer has a hole in her neck. It almost makes me want to cry. I am so thankful. I look back and cannot hardly fathom how much she has come through.

It is amazing.

I attended a church service Sunday at a friend's home and the pastor said in his sermon...I'm paraphrasing...'wouldn't it be great if we knew the outcome of situations that arise when we are being joyful because we know that is what we are supposed to do, not because we are really joyful? Won't it be wonderful when we sit at Jesus' feet and understand why things happen and we are TRULY joyful' WOW! Like a ton of bricks. Hit me right in the heart. I cried as he prayed the final prayer.

How much of the time I'm really grinning and bearing it bc I know that's what He wants, not bc it's how I really feel. I know there is a purpose...

I also had a conversation with a new friend and she was sharing a difficult situation she was going through and she said to me, "I know He just wants me to trust him" "I just have to trust Him"

I have said to myself and others, many times, I must be missing something..it seems that I'm just not learning the lesson God is trying to teach me.

My friend, Deb, made a necklace for me some time ago and the words she stamped in it were TRUST.

I think it will be a while before I can truthfully say I'm joyful for EVERYTHING that is going on. Hey, I'm human and sinful and selfish. But I think I'm finally fully trusting.

I know these thoughts of mine are scattered, but it's the best I can come up with at the moment.

First time in the POOL

Today I took the kids to Ceraland to swim. We only got to stay an hour, unfortunately, as a thunderstorm rolled in. But we got some good pics, and once Lillian got used to it, she was a maniac, I could hardly keep hold of her, even after she fell head first, all the way in, (I almost had a heart attack, but had to remain calm on the outside) She did really well. Didn't even sputter. First time since birth she has ever been submerged. She finally got to waving at everyone and making friends, but I tell you, she was NOT letting that water slow her down. This alone caused me to have to be with her constantly. The water came all the way up to her chest, I think I will need some back up next time...whooped.

I think

Right now is the healthiest you have ever been. I look back at old pictures and see this tiny frail baby, struggling to survive. While you are still very pale, and still trying to learn how to move that tiny body of yours, you look so much better. I remember that first year, expecting at any moment you would die. There, said it. Now it rarely crosses my mind. Perhaps it is a protection mechanism. Just don't go there. Tonight I was impatient with you, I was tired and feeling like I needed a "break", but then you do the smallest things that make me smile and I instantly let that feeling fade away. You are such a blessing and a joy to me...my heart aches it is so full of love for you. You have brought something even more special to my life and each one of our lives. I think it is difficult for anyone to be around you and not be in love. I still struggle with the unknown, but.... I think I've begun to let go of some of the things I grieve you may miss out on...because it is ok. You are special, you are different, and that is OK. It is not bad or worse, as some might see it. You will always find joy in life where others will not. I love you. My life may not have turned out the way I thought...but I would not change it. Not a moment. Love, Mommy

A little bit of prayer

Get this image imprinted in your mind....now, close your eyes and imagine her in a high chair. We sit down to do our evening of family Bible study, and I ask, "who would like to pray tonight?"

I survey the room only to see my tiny tiny girl slowly raise her arm in the air. I say, "oh you do? you want to pray?" She nods. I say, "ok, say what I say" . She clasps her tiny hands together and bows her head into them. I say "Dear Jesus", she says, "uh uh", me, "be with us tonight", her, "uh-uh-uh", me, "thank you for this day" her, "babble babble", me, "AMEN", her, "a-ME". No better "words"... and Jesus smiled.

Oh, granulation tissue, why must you interfere?

We made our follow up trip to KY with Lillian for her second stoma closure. It looked great until one day we took off the gauze and there was this little bubble. Like a little flesh bubble. It looks awful, truthfully, and weird. It did not garnish good looks from Dr Specialist ENT. (did you know there are specialists within a specialty? I love having this information...NOT) Anyway, she said she had just attended a lecture or class or whatever...probably a CME on stomas and they had recommended using ciprodex drops on the stoma and it gave great results. So, that is what we are going to start doing and see her again in two weeks. She said she just hopes that it is not growing on the inside as well......EEK GADS.

CRIKEY. I think that is all I can really bring myself to say now. ugh.

Good Reports

Dr. Heart was very pleased with Lillian's heart today. She had an EKG and Echo. I love that the doc actually performs the echo with Lillian sitting right in my lap. He said her coarc repair looked great. VSD really is closed. PFO is still open but causing no enlargement of the heart at all...he doesn't need to see her for TWO years....um yes, I said TWO years. Can you say WOO HOO? She had no thickening no enlargement. YEEEHAAAAWWWW.

Glad to have that one over with. So relieved.

I LOVE monies!!!

Lillian got some money from her Paw, Then she snatched one of the girls' dollars...

OH, Papaw, She LOVES money...that' s a one AND a five....lol

Hmmm

We have returned home, trach-less. PRAISE. THE. LORD. Once again Lillian has taken us on a ride like no other. It appears that the hole began to heal again on it's own. Last Friday when it was so huge, I placed gauze and tape over her neck because I just couldn't look at it. It made me have anxiety attacks just seeing it. The doctor went in and did a scar revision. It all looks to be infection related. She could not push any air through the hole at all. They reinforced the incision and put a pressure dressing on. She didn't want to pull too much skin so it doesn't pull and make a wicked scar. If the seems somewhat confusing and hard to imagine, don't feel bad, bc it does to me and I'm living it and don't quite have the words to describe. She also did not do another bronch bc she just didn't want to mess around in there and cause unnecessary swelling. She is guessing that perhaps it did open and started healing up on it own.

She is pretty much looking like her self and acting pretty happy. YOu should see the monstrosity of the bandage on her neck. I am emotionally tired which makes me physically tired and it doesn't help that I don't sleep on the nights before surgery...go figure.

I had gotten a letter from her cardiologist to schedule a follow up appointment and I told Matt how I started to feel a little fearful about it. I don't look for negative things, in general, but it just seems that we are up then down and up then down, I have no desire for her to have to go into heart surgery again. EV-ER.
I will continue to take comfort in the power of prayer and how awesome God is. I know His hand is on it all, it's just hard for me to take my hands off....

Thank you for your prayers, love, and support.

The journey continues....

Surgery Update

Tomorrow at one, Lillian will undergo surgery again to close her reopened stoma. This will only be the ENT. She feels confident that she can use neck muscle tissue to close. She said if she gets in there and finds there is not good tissue, they will replace the trach...pause for puke in the back of my mouth....but just until they can coordinate a surgery to take tissue from her leg. She said, the best procedure would be the leg graft, however with the time issues, she feels it's worth a shot to try the neck.

I do not intend to spend the night in the hospital for the night this time just for them to "watch" sats. Since noone actually did, I see little point in going through that charade again.

Up the hill we climb.

Who knew....

This little angel...ahem...would use this bucket of water.....

to wash in her "new to us" washer/dryer

this poor little creature....

When all was said and done, I had to hold back hysterics of laughter. You can actually spin the buckets in the w/d...she came to get Bethany and show her what a good deed she did....

Gracious me. Steph, I think this should probably go into qualifications...

Sisters, there were never such devoted sisters...

I wish we could have gotten the picture of Lillian when she first got up there with Madeline to look at the scrapbook, she put her little arm around Madeline and was just so tickled to be looking with her...it was so cute...

She Dances...

In an attempt to stay positive...

I guess I have not mentioned much about positives in Lillian's little life lately. Seems I've kept things pretty medical as of late. She is pretty busy, she L-O-V-E-S to be outside. On these very nice HOT humid days, I have to keep the front door locked because she wants to be out there. She most of the time sits on the porch and "talks" to the air. Very cute. She isn't really talking per say, but she has plenty of communication, just can't understand most of it. She has taken to taking us by the hand and showing us what she wants. She mumbles a LOT of stuff, but Lord only knows exactly what she's saying. She also is doing pretend play, she takes two objects and acts like they are having conversations with each other, also pretty cute. She is such a smart little girl and misses very little. I believe she understands most everything that is said and what is going on around her.

She is trying very hard to run, but still not quite there and jumping is still coming along as well. She loves putting everything in her mouth and chewing, but swallowing is still not happening. Her weight has been holding steady at 25 lbs for quite a while and she is starting to outgrow some shoes FINALLY! Wooohoo!

Some concerns I have, one of her ankles seems to be turning in, going to address that Wednesday with her PT. Her airway, of course. Anxious to hear back from one of the doctors about a more solid plan. Sometimes, I just wish they'd say, oh this happens all the time, but they don't. She is on a waiting list to get into the child evaluation center in KY. Her breathing has been good and we haven't used any nebs in a couple of weeks. So far, no ear infections for a couple weeks either. Maybe warm weather is the ticket? I don't know. Allergy testing has been put on hold until her stoma is closed. She did pretty good on our trip to the caverns, but did have a little tantrum at one point...I'm sure the other visitors loved it. LOL.

Reopened

The stoma site is almost totally reopened today. The black stuff is just the site. The open site. A small piece of very thin skin remains. She is coughing today.

Did I say this chapter closed??

Well open up the book again. This morning met us with surprising news, remember how I said it looked weird? Her trachea has reopened and that stuff I thought was stitches is not, it is some reaction to scar tissue or the actual tracheal track we are seeing through the skin. They rescheduled her for surgery in two weeks. We then headed over to the plastic surgeon who said her palate looked great, but he would like to be available to jump into the surgery if needed to do a graft to make a more permanent closure. That would push the date out a little farther. He also said we may need to consider that this may just remain open. OMW. A lot to swallow. I'm giving the short version here bc we are back on our way out...so there it is. I'll try to give more explanation later. Gotta run. I'm sure this evening will be difficult when I am letting things soak in...but what can I do but stay on the ride. My sweet girl.

There IS a first time for everything

Today, for the first time, in her short lived life, I gave Lillian a bath without fear of drowning her. She was able to splash, have her hair washed and be a somewhat "normal" little girl in the tub. You think it sounds crazy, but I'm trying not to cry. The smallest things bring such joy. She will now be able to go to a pool, play in the sand, and pass air through her tiny body the same as we do. It is awesome and heart swelling. Now.... I'm crying.

We follow up with the ENT and Plastic surgeon tomorrow. Will update soon.

Truly no place like home

Last night was truly a bad night. The nursing staff was negligent and just plain lazy. I did have the opportunity to speak to an assitant manager, but after some thought today, I don't think I will stop with that. Bottom line, if a child is admitted for having a trach stoma closed so that sats can be monitored....if there is a desat DON"T call in my room and ask "can I help you?" , or scream it three times. NOT at 11pm not at 12AM not at 4AM, NOT ALL NIGHT LONG. BTW, if there is no response from a nonverbal three year old toddler in a twin bed, certainly do not sit on your butt and IGNORE that there is an alarm coming from the room. SEND her nurse in when asked or send SOME ONE when it is asked of twice. AND NOT half an hour AFTER it was requested. DO NOT ignore me at the nurses' station and certainly please don't let me interfere with your idol chit chat so I can have a blanket to sleep with. The list is long and I could add a lot more, but I will stop. You get the drift. Basically, Matt had to have someone drive him back down to KY this morning and miss work again to drive us home bc I simply could not drive having had only two hours of hazy sleep.

The trach stoma is closed now and I'm hoping the scar is not too wicked. It looks like a really jagged t shape. She was pretty uncomfortable yesterday, but seems to be doing fine tonight.

There is nothing that feels better than being home and sleeping in your bed. Thanks so much for all the prayers.

The Final Chapter?

Tomorrow is hopefully the day we close the book on our friend tracheostomy. 12:45. God's will be done.

Dr Throat

We just got back into town from seeing Dr. Throat. She felt Lillian's stoma indeed looked smaller. I notice a little difference, but not major. She is now scheduled for another broch on June 8, tentatively, if the bronch looks good, they will close the stoma and she will stay overnight to make sure she can tolerate the closure. She is also going to re-examine her ear tubes, she said one looks crooked, so they will replace it if need be.

Her appt time was at 11 and we didn't go back to a room until almost one I believe. It was a quick visit and the office was very busy. I was able to chat with a Mom in the waiting room who had a little guy, about four years old. I could tell he was a special needs child and we soon struck up a conversation. My heart broke for her as she told her story of her son. He had been a healthy little boy and just collapsed in the back yard while playing last October. She told me tearfully, he had a heart attack and some brain injury, but as of yet, it is a medical mystery as to why it occurred. She shared with me, that dr. throat had saved his life and rescued him from getting a trach. He was such a sweet, precious boy and shared some smiles with Miss Lillian. Lillian was very interested when this Mom gave her baby some medicine through his G-tube. If I could read her mind, I'll bet she was thinking, 'oh, so I'm not the only one'. Upon being called back into the treatment room, I told this Mom that I would keep their family in my prayers.

I started to have a little bit of anxt on the drive home while comtemplating the coming bronch and just stopped my brain and focused on the Lord. Whatever happens, happens. It is in God's hands and I'm keeping that focus.

Just being there.

As I go back and re-read some of the posts on Lillian I can vividly remember those times. Actually the last few weeks with all the news of the airway it was very much like being back in the NICU with so much unexpected information. Feeling so helpless and in disbelief that all this is really happening. I remember in the waiting room, when Dr. Throat came out and said, "her airway is much to narrow" I literally felt like I was transported back to those days. Disbelief and helpless. Thinking that this would never end for my sweet girl. Speechless..and in those moments knowing there is a room full of people, yet feeling very alone. Ironically, noone spoke. There were three people present around me and noone said a word. I think they were just silently praying. Knowing there was nothing that could be said...just having their presence surround me was comfort enough. It is difficult to thank someone for such times. There really are no words to express how I felt. Just a hug and tears, to share my pain. Honestly, I don't dwell on the hard times. How could I? I would never be able to take joy in the good ones. It does, though, remind me that God is ever present. He sends the right people and His comfort.

When Lillian was born, most nights I spent crying and praying into my pillow. One particular night, I was given a sleeping room on the NICU floor. Funny looking back now, it seemed like a little prison room, toilet, sink, bed. Didn't matter, I was so grateful to not be sleeping in the waiting room floor, it didn't matter. I think this was probably the second week into the journey...I don't know for sure, it was difficult to keep up with the days. I lay there in one of those uncontrollable sobbing states. Praying. Praying for it to all be me or for it to not be happening at all. Praying for God's will and the ability to accept whatever it might be. Just so devastated. Missing Matt and the girls, feeling so torn between my family and dealing with it seemingly alone. I had the lights on, and in a split second I felt as though someone had curled up beside me in the bed and placed an arm around my waist spooning me. It only lasted one or two seconds, but it was enough to snap me out of the state I was in and startle me. Of course, my eyes flew open and had the light not been on, I would have sworn someone was in the bed with me. Friends, I took me about two seconds later to realize the Holy Spirit came to comfort me. Little, insignificant me. I have cold chills when I recall it. I was able to stop crying and fall asleep. I know, and will never be convinced otherwise, that God is always there. In later days, much later days, I shared this story with my friend, Michelle and she began to cry. When I asked her why she was crying, she told me I didn't know how many times she prayed for the Lord to wrap His arms around me.

There are moments when I long for that 'touch' again, but just remembering it reminds me that He is there. Always there.

I'm so thankful for His presence and those people He has placed around me to bring His comfort to me. I'm thankful to see His goodness, everyday, trials and all in this precious life.

Crank-y with a capital C

It has been a rough couple weeks for Lillian thanks to unending ear infections...but I dare say it...I think she is getting better. I'm not used to a whiny girl. In general she has to be REALLY really really sick to be grumpy, but I think the combo of ear infections and allergies had just about had their way with her. She is finally getting a peaceful nights sleep, little to no coughing. I've been able to stop the benadryl. You wouldn't think that would be such a great thing, but in my eyes it is. I hate to medicate her. I'm not thrilled with medicating, but at times it is necessary. We will revist Dr Throat again next week. From there we will schedule another bronch and see what happens. Oddly enough I think her stoma is looking smaller or different or something. It is not as sunken in as it was. The procedure changed something. I wait cautiously optimistic and praying for God's will in whatever happens next.

Praise the Lord

We are back home in Indiana, friends. Let me just say, as I sit in amazement. Lillian went in for her procedure and the doctor came out and said her airway looked totally open except a tiny shelf. They did go ahead and do the balloon dialation and used a chemo drug to spread on the airway to discourage further tissue build up. The doctor was simply astonished. She asked the whole OR if they had the right kid, but her airway was very much open now and even her stoma was smaller than a week ago. Seriously, I was sitting there in stunned silence. She said,' I don't know what happened, I really didn't anitcipate the procedure working for her considering the amount of stenosis there was, and now it is almost completely open...' I said ' it was prayed open'...she said you must be right. I feel like I've been on the fastest roller coaster in the land this week. There is absolutely no comfort like the Holy Spirit reaching down and showing us what God can do. I'm speechless for the most part. Speechless and so thankful. Everytime I close my eyes I am giving thanks. I said going into the surgery that that I knew this was God's path and not my own. He continues to bless us and answer our prayers even though it may not be the way I want it. We take her back in four weeks for a follow up in the office and then another bronch and closure of the stoma if needed. They may need to do one more balloon dialation, but she felt that was slim for the time. She did have quite a bit of pain last night, but she is doing well today.

"We can rejoice, too, when we run into problems and trials for we know that they are good for us-they help us learn to endure" Romans 5:3

Tomorrow, tomorrow

We begin the journey to stretching the airway. I'm not sleeping too well, I don't feel too stressed, but I keep waking up off and on through the night. I'm also having tummy troubles. I think perhaps I've worked up an ulcer...not sure, but I'm having some raging bad heartburn and nausea. Bleck! Lillian is doing well and is her happy little self. She seems to have calmed a bit on the snot oozing, which thrills me. She is sitting in her high chair having a feeding and laughing at Dora. So funny. Surgery is at one. Will be a long day. The first of many to come or perhaps its the many of many more to come?? God knows and that's all I need to know.

2 Corinthian 12:9-10 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness,' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I will delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

New Date

The new date is Wednesday. I'm not even sure what to pray for...April 28.

What is worse than knowing...

Not knowing. Is it easier to grasp things if you know what is to come? I think it is for me. I think it is the struggle of not knowing how many more steps lie in the journey. Is what is being done the LAST thing being done....

All along, I think I've felt like life would return to a relatively "normal" existence once that trach came out. There was the time waiting and watching and praying. Close the palate and then we can attack the decann process. Get the trach out and we can work on feedings and speech. That is the way my mind saw things. But each time, there is a twist. Palate can't totally be closed and that affects the soft palate which affects speech and swallowing....get the trach out and the stoma doesn't close. Go to close the stoma and well, we know how that turned out. Then there's the NEXT procedure....how many times will have to be performed?? Is it permanently a solution?? How many more times will she have to go through this? Why? Am I not changing and growing in the Lord? Are my prayers not directed in the right manner? Will she EVER speak, will she forever be non-verbal. Can she ever eat normally?? I wish someone could just open up one of those handy little charts like they have for "normal" kids and show me the path.

I know God, and He is faithful. I know He sees us through this all. It is just my human brain that can't wrap around the NOT knowing.

Update

Not good news. Lillian was unable to have her stoma closed bc her airway has narrowed. She has quite a bit of stenosis. They said her airway was small for a three year old and they could just pass a neonatal tube into the airway. Next week, they will do a procedure that is essentially an angioplasty in her airway that will microfracture the tissue and hopefully cause it to stay open to the size it should be. This procedure may or may not be effective. They may have to repeat it up to four times to consider it a failure. They will try the first one next week, date to be announced...she will have to stay in the hospital overnight. If it does not work they will bring her back in two weeks and try again. This will repeat up to four times if necessary. If it does not work....they will have to do a bone graft to rebuild the airway up to the size it should be. I was totally unprepared for this outcome. Totally. Not at all what we hoped for. She was supposed to go back in to surgery at 1145 but they didn't take her back until almost 2. We have been home now about 15 minutes and I have a very big headache. Thank you for continued prayer.

Dates

The trip to KY turned out quite well. I really liked the new specialist. She was super nice and very informative. The date...April 20th. Won't know the time til the day before, but that is the scheduled date. A few troubling thoughts....she said, generally when the stoma doesn't close it usually means there is still a need for supplemental oxygen. Ok, so maybe that is the only troubling thing she said, BUT...why do I always think that these things will be this easy no muss no fuss ordeal. She wants to do another bronch when she goes in to check the airways, then she will essentially reopen the healed portion of the stoma, disconnect the the tissue from the esophagus. Then she will pull over muscle to close the hole then pull the skin together. She will have to be an overnight stay just in case. This all scare me. It scares me. This will inflame her airways, cause swelling and pain. I'm scared. I cannot even what if. It's like the trach coming out all over again.

We will then go back to see her for follow up two weeks later and she will also have some preliminary allergy testing done. Hopefully an answer for the snot factor.

21 days to go.

Tomorrow

We will visit a new ENT, a laryngologist...a specialist in the office of the ENT. Seriously...*shakes head* Anyway, hopefully we will get a surgery date. Snot continues to be an issue. I called to get her into the pediatrician (after I've tried to do all that I can to manage at home and it is just getting worse) and I can't get her in until Wednesday. As I examine my tired-ness, that's the best thing I can come up with..sorry, I try to think of those who are also in less than ideal situations and are struggling. It is just difficult and worrisome to have a little life that is so fragile. It is so hard for my brain to comprehend how it is to be sick ALL the time.

It seems

• that doctors' offices are incapable of returning calls
• offer no apology for NOT returning phone calls
• do not take the time to fill out FMLA forms
• do not make referrals when asked
• do not return calls regarding said referrals
• do not value commucication AT all

I'm a little annoyed, can you tell? That being said, we still dont' have a surgery date. Lillian is suffering serious snot issues that I can't seem to help with medication. I feel like I'm running but not going anywhere. Feeling a tiny bit overwhelmed with this life in general.

THAT being said, I'm so glad I'm not alone. God soothe my fears and settle my soul.

News

Sorta news anyway. I had a call out to the surgeon and hadn't heard back, so I called again today. Apparently, Lillian's ENT is out of town til Tuesday and they will call me Tuesday to set a date for the new surgery. Thankfully, we will not have to be seen in her office prior to the surgery date. I was just looking at her picture on the page and remembering how I felt at that moment. To look her and realize how seemingly chubby and perfect she looked, yet so many things were going so very wrong in her tiny body. It has been a difficult week here, for me personally. One of Bethany's classmate friends lost his eight year old brother to cancer over the weekend and a friend from my former church gave birth to her baby that had passed into the Father's arms on the same day. One of my close friends is struggling quite a bit and I want to help her and be there for her, but I'm not a very good comforter because I just find myself weeping right along. Lillian had a puking episode today and that just about does me in. It frustrates me and I know it is so unpleasant for her. I can be so grateful and so irritated all at the same time....ugh. I got information from our speech path regarding feeding tubes...did you know that tube fed kids are more apt to have reflux??? I know she gave me the information so I could be more informed and I was happy to receive it, but then after I read it, I wondered how in the world she'll ever have a positive eating experience. Rough week. Looking forward to spring break.

A Pulmonary Follow up

Lillian saw her Pulmonary specialist today in KY. It was a good visit. He thought she sounded great, which is exactly what the mother of a CLD (chronic lung disease) child likes to hear. There's always a but you know, though. As if getting and having a trach for three years isn't enough....and having surgeries that must be done to live a "normal" life are never ending. She again, will have to have surgery to close her stoma. The stoma is the opening where her trach used to be. It has never closed and will have to be closed surgically. While I know this is a very minor surgery, she will still have to be put out to have it done. Into the operating room again. I'm not complaining....really, it probably sounds like I am, but really I know it is not that big a thing, I just HATE my baby going under anesthetic again...it also scares me a bit. I know she is breathing and capable of breathing without the hole there...it's been tested.....it is just a bit scary to know that our little "extra" breathing room will soon be gone. I told Matt when I got home that it sometimes always seems to be something else, then I changed it to, no, it is ALWAYS something. Ok, maybe I am complaining...

On other fronts, eating and speaking are just not coming along as I thought they would....still nada for eating/swallowing. Our speech path strikes me as discouraged, but perhaps I'm reading her wrong. Oh well. Just another day in Holland.

I hope this just makes you giggle...

A better pic and quick report

She has strep. I'll take it! She is still miserable, but at least we can treat it.

If you're wondering where we are...

Life has been so busy. I'm feeling very neglectful of Lillian's blog. I haven't posted anything in such a long time. Mostly, I get to sleep at night...which is a VERY good thing!! Seriously,though, just a quickie note to update how things are...let's see...Lillian goes to school in a private room with no other kids twice a week for one hour. She receives 30 minutes each of PT, OT, ST, and education time. That happens on Mondays and Thursdays. Tuesday and Wednesday she has speech therapy at another facility half an hour from home and Wednesday afternoon she receives PT and OT co-treat at another facility in Seymour. It seems that is all I get done all week is running to and from therapy. I don't know how I ever worked outside my home. Kudos to those Mamma's out there doing both. Days like these I totally and completely feel so grateful that she was able to have First Steps in our home for those first three years. Whew.

Feedings-well, not so good. Feeding by mouth is going very slow. While she enjoys tasting, she doesn't love to swallow. Speech---maybe just as slow. Not really saying anything more than ma-ma. These two areas in particular allow me to become easily discouraged. I know I know I know it will all take time...however, the realistic part of me has to look at the possibility that it may not happen. I know there are folks out there thinking I just need patience...I feel like I am, but you have to look at both sides of the coin from time to time. It's difficult.

She is making progress physically as well, she is trying more and more to jump and run, but I'm sure that will come in time.

As always, she is sweet and precious and loving and happy.

This winter has been much more gentle for my sweet other than little illnesses such as ear and sinus infections which really take a toll on her, but PTL no hospitalizations. She is, however, sick currently with a raging fever and unable to keep anything down. We will be heading to the pediatrician this afternoon. I leave you with a picture of her in her big girl bed, which she happens to LOVE!