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Thursday, May 13, 2010 7:55 PM CDT

Lydia fussed all day yesterday and started running a fever. Cultures today quickly grew out gram negative, which likely means a drug resistant infection requiring removal of the port-a-cath. Won't have computer access at the hospital but will update when I can.

Allison

Tuesday, May 11, 2010 10:44 PM CDT

Lydia is still on IV fluids to maintain hydration but less by the day. Her tube feeds have been totally revamped in content and speed. The goal is to to slow down transit, allow more absorption. It�s been a delicate process and I�m hesitant to expect no further setbacks. The past couple days have been good though.

Success came first during the waking hours, with the help of banana and applesauce by mouth three times a day. Finally overnight feeds went in without causing dumping/dehydration last night too. It took a very slow rate and an unusual recipe, including heavy whipping cream and pectin (apple-based ingredient used to make jam gel). The surgeon was hoping to avoid further meds, suggested the pectin which brought me to a source also recommending cream. Meds bring further side effects, such as cramping.

It would be hard to decipher this while Lydia is still rather fussy already. If you leave her alone on the bean bag she�s quiet. Expect a major protest when the wheelchair comes near though. That means she�s mad during meals but she is eating. As a result, Lydia is back to gaining. I didn�t get a weight at her most recent low but did check today and she�s almost back to her height post surgery, 30.5lbs. She�s still sleeping at night, so we can make this work if it�ll get her safely to and through surgery.

I have a week and a half to continue tweaking more feeds/less IV fluids before handing Lydia off to grandparents for our trip. Pouch and wound supplies are finally settled and working. I even cooked supper tonight, just not dishes yet. Jason and Amelia folded the mountain of laundry while I worked on ornery feeding pumps and reaccessed Lydia�s port.

Aunt Levaun has moved into the local nursing home. Josiah had his first asthmatic reaction to a respiratory infection. Amelia had another brief tummy bug. My veggie garden is planted. Sophie�s hair was done as part of my Mother�s day gift, in the home in front of a movie�win-win. Caleb turned four thus does no longer want to wear his 3T clothes. Sophie wildly excelled with her standardized test scores. Josiah discovered how to climb stairs to the slide on our backyard playhouse. Amelia is continuing to have minor school infractions but taking her consequences peacefully, with a great attitude. The end is in sight.

This new normal is very busy even without leaving the house but we are settling in to it.

Allison

Monday, May 3, 2010 9:08 PM CDT

I imagine that God provides glimpses like last week to assure us a happy, healthy girl is still in there. She�s hiding again though. Thursday night the fussiness started creeping back up. I put a call in Friday regarding the accompanying decreased wet diapers. The folloing attempt to increase tube feeds again were counter-productive. Lydia's gut became so reactive to anything more than drips at a time, that even her 2tsp medicine doses now induce a large volume of diarrhea. Being aware that we were going in the wrong direction, I decided to weigh her last night too. She�s three pounds down from the check a couple weeks ago. Sigh.

Lydia is five weeks out from her last surgery, supposed to be half way to the next. That�s somewhat up in the air though. Two GI consults have raised questions as to the prospective success of reconnecting Lydia�s small intestines and remaining colon. Will the remaining colon be functional? If not, would another rupture occur at the internal suture site? New plans include a barium enema the week prior to surgery and possibly anal botox, to loosen the sluggish sphincter. The idea is that a successful enema study and botox would lend to proper post-surgical healing. In addition, Dr.Weidner really wants Lydia�s gut worked out before surgery.

I previously understood that right now was simply about building Lydia up nutritionally, which can be done with IV nutrition if necessary. That isn�t the big picture though. So, instead of focusing on "calories-in-whatever-form", tonight Lydia is on gut-rest. The beauty of this is that she�s still at home in her own bed. When I tucked her in she was asleep with basic IV fluids and IV B6 running.

Lydia isn�t crying all the time but isn�t happy. We are hoping that tomorrow will be better, with her tummy not being taxed. It isn�t clear why she�s still having so much trouble. An ileostomy is proving very hard on her though.

On a brighter note, the pouching is going better. We made it two days with the last one, which may have to be our new goal. The wound dressing is still a moist one. I assumed that we�d eventually switch to dry when the incision filled in adequately, so it would scab and heal. Wrong. I now understand that the skin will spontaneously start growing over the granulation tissue and eventually meet in the middle, completing the healing process. Fearfully and wonderfully made indeed!

I got a call from my great aunt�s assisted living facility today. She is in the hospital in Thomaston and will need to be discharged to a nursing home here. My mom was already planning to come back in a couple weeks. She'll be keeping the younger kids while Jason and I run off for a respite trip, five nights at the beach! (Jason's mom will have Lydia.) Our host just warned that he�s afraid the beach will be covered in oil from the BP spill. I assured him that we�ll relish the time regardless. The trip was planned long before Lydia�s current event began. The next surgery has been scheduled appropriately, to allow a week of pre-op between our return and the big day.

Jason and I went out for a quick date Saturday night too. I hadn�t even been able to ask him about the situation last week with our sweet trouble-maker. It was great to reconnect. We came back to tackle dressing/pouch change, then made it on time to church the next day, Lydia included. What a blessing to have the support to allow us to take the fussy involved girl. One of our congregation�s very talented vocalists even came in to give a mini concert for Lydia and her classmate.

Another highlight of the week was housework! Sunday school friends trickled in all day Friday for a group cleaning effort that resulted in much less visual disorder. I laughed when I got out of bed this morning and realized that Jason made his side of the bed while I was still asleep. I think he�s enjoying the tidiness too!

Yet another blessing is requiring some glasses of maturity to recognize. When the newish roof started leaking, my knee jerk wasn�t self-pity but �It�s your roof God. If that�s where you want us to spend our time and money next, so be it to your glory.� To see entitlement continue to loosening its grip on my heart is so freeing! I�m learning grace for living.

I Peter 4:1b-2 "Think of your suffering as a weaning from that old sinful habit of expecting to get your own way, then you�ll be able to live out your days free to pursue what God wants instead of being tyrannized by what you want.�

Yesterday evening Amelia asked for a bowl to take to bed, b/c of her tummy. I wasn�t rattled, who-hoo. Granted she didn�t look sick (and she wasn�t) but I realized that I�m no longer scared of the stomach bug. Three times in roughly a month and we survived with little damage. That used to be one of my biggest fears as a mom of many littles. Death has no sting for a believer. A very different perspective of life�s challenges is ours to be had as well!

James 1:2-4 Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Absolutely, some things still set me off, stupid things. Sanctification is still in progress but it's precious to see our pain not being wasted.

I�m not consistently sleeping well. The days are just so mentally charged. I�m taking every break I can to let down, even baked a batch of cookies. And He is faithfully carrying well beyond our abilities. I still think home health should send out someone skilled to demonstrate IV equipment though. A manual? Who reads manuals? ;o)

God is good, all the time!
Allison

Thursday, April 29, 2010 3:09 PM CDT

Did I mention that Jason, one of Lydia�s caregivers, my grandmother, my mom and her friend that were visiting all had another tummy bug last weekend? Then, Monday was one of the most frustrating days yet regarding Lydia�s care, insurance run-around and multiple pouch failures. Actually, the first pouch of the day came off due to a new allergy to the adhesive! I was mentally and physically fried by bedtime�not having slept much since Saturday�s seizure anyway. I went to the laundry room on my way to bed and found the upright freezer door cracked. It had only been ajar for a few minutes. I never remembered why I went in there in the first place but some scriptural lessons immediately came to mind.

We've been studying the �Red Sea Rules� in Ladies� Small Group.
#1. God means for me to be where I am; by His appointment, in His keeping, for His time.
#2. Be more concerned for God�s glory than my relief.

Sure, the day had been full of challenges that I wouldn�t have chosen. God did choose them for me though. The freezer defrosting wasn�t one of them. That is His call and His mercy. May I glorify Him in these processes, whatever they may be and however pointless they may seem to me.

Tomorrow will be three weeks since Lydia's been discharged and it�s still chaotic here. A medically-wise friend asked me if I�d considered that this is our new normal, as long as Lydia has an ileostomy? I think there�s a measure of truth to that. Some of the transitional stuff is being resolved, like acquiring Lydia�s B6.

After the seizure, it became obvious that Lydia needs this as a shot or an IV infusion. Her gut absorption isn�t reliable right now. It took two days of constant phone work to figure out how to make this happen through insurance. Tuesday alone, the nurse at the pediatrician�s office sent 12 faxes on Lydia�s behalf, as each insurance-recommended pharmacy issued their request for documentation. Each of those faxes was results of a phone call or two on my behalf. Finally, a friend suggested a local home health agency that worked!

Today, we got the treasured delivery of a month�s worth of IV B6 to go with yesterday�s infusion pump. This is so much more humane than the shots, which really burn. Both work though. Can you see?





I love the pink cheeks in these pics taken just yesterday. Lydia just loved seeing her teacher, even though she didn�t want to work.



Mrs.Potts was able to get approved to personally fill the position to administer Lydia�s home bound, so she could see her girl.

On top of the great color and spunk I�m seeing, I�ve even caught Lydia sleeping a couple times, without sedation. That never happens! I wonder if her body is able to use this form of B6 so much better, that her brain is in a different level of rest than even during her healthy baseline.

Other challenges due to the ileostomy include hydration and nutrition. She�s needed outpatient fluids twice since discharged. Even those mostly end up coming out her side. She just isn�t peeing much, which stresses the kidneys. Her tube-feeds are diluted, so her protein levels (which aid healing) are declining. Oral feeds are happening more but not consistent yet. Lydia is pretty content as long as she�s getting her way. Feeding isn�t on her priority list.

The last of her sutures were removed by the surgeon Tuesday, opening up new options in wound dressing. The hope was to shift gears to a set up that only had to be changed weekly. The wound care nurse spent a couple of hours with us; identifying a new pouch system to try on top of the �sturdy� wound dressing. We went from the office to the hospital for those fluids and the wound dressing was already peeling up b/f heading home. I spent a good while on the phone last night with a friend of the family, also a wound and ostomy care nurse. I think we are getting closer to good dressing options for both but still not lasting more than 24hrs max. When we decide what supplies to go with, hopefully we can get a month�s supply ordered and I can stop the frequent calls for samples.

Changing this stuff isn�t particularly hard but takes time, usually after the kids are in bed, which is happening later just because Jason and I are moving slowly from the fatigue. Lydia is sleeping through the night. And we still have paid help and friend help!

We love our bi-weekly organic produce box. I keep thinking that I�ll be back in the kitchen soon, so I haven�t cancelled it yet. The past two deliveries have ended up mostly spoiling though. I just don�t get them processed for lunches/snacks that we can grab. I called a friend today who I know loves to be in the kitchen and doesn�t have little ones at her ankles. She eagerly agreed to take this on. When she came over to gather the food, she stopped to wash dishes, make some tea and fed the boys lunch. Tomorrow the ladies from our Sunday school class are coming in two shifts to clean. One mama w/ two little guys will be playing outside with our boys during the process.

My mom and I were talking about the produce plan. It�s one of many little aspects that have yielded such blessing. I already cherish the time spent with this sister whom I consider a friend from church, even though we�d never had more than a conversation in passing before today. The relationships being built are precious. Simply due to the logistics of lots of young children, it�s challenging to invest in friendship building. I miss that intimacy. Someday I will be able to more zealously. Right now it�s so sweet to see how God is even providing this fellowship inside my home.

I do look forward to settling back down, in His time. We have a few more opinions to gather from Lydia�s specialists but Lydia�s surgery to reverse the leostomy is currently scheduled for June 7th. I have more info on this plan, not so cut and dry. I�ll save that for another day though.

I expect all my girls home soon. We don�t usually schedule the caregivers for Sundays but did this week. We hoped to attend church w/ all but Lydia. It ended up being great to have Maggie here to watch Lydia post-seizure instead, while I rested. She even ran after Lydia�s prescription for me. That put me short in-home hours this week but another area of funding hasn�t been used lately, community access. That�s available if Lydia goes out somewhere with her caregiver. So Lacey packed her up this morning and took her to the library, to the mall and out to eat! What a difference a few days and some proper B6 makes, being that I wouldn�t even take her to church Sunday.

Two more Red Sea Rules are:
#5 Stay calm and confident. Give God time to work.
#6 When unsure, take the next logical step in faith.

Yeah, the principal called regarding 2 out of 3 strikes towards out-of-school suspension, for stealing book fair items�while I was jump starting the van, late to the surgeon�s appt. I passed that on to Jason and went to the appointment. Today, the next logical step is simply chocolate before homework time. ;o)

Allison

Sunday, April 25, 2010 1:28 AM CDT

**Sun night update: One could never guess what the night prior held, based on that sweet happy face above. She's still hung over but has come close to smiling today for the first time in months. Can't you see the smile in those eyes?**

I can see Lydia�s hospital bed in the living room from the kitchen. When I walked through tonight I noticed her mouth in quick rhythmic motion. I didn�t want to believe it but know that dance too well to forget. I alerted Jason of the seizure in progress on my way to retrieve the emergency med bag. None of the contents were in date but close enough. Good grief, even my rubbing alcohol was expired, for the B6 shots! I was only � a Boy Scout tonight, well-prepared last year. What can I say? Lydia�s last seizure was over six years ago!

It took a lot to get her stopped. None of her doctors were on call (surgeon, neurologist, or pediatrician). It would have been nice to consult with someone who knew her neurologically but she is now stabilized. I have a number of calls to make and coordinate Monday morning, including local doctors, the B6 specialist in Seattle, and new supplies.

We are treading on thin ice and I�m starting to wonder if this may be the case until her reversal surgery. Lydia�s surgeon has been the first person to warn that an ileostomy is not a good long-term solution for her. Absorption of fluids is going to be an issue. It�s now evident that absorption of meds may be as well. I�m so thankful she does have some colon left in place for a reversal when the time is right!

B6 is what keeps Lydia�s seizures at bay. While inpatient, it was given via IV. She's been getting it by feeding tube for 2 weeks now but also started the Ativan back a few days after she got home. I suspect that the Ativan was covering Lydia neurologically as the B6 was fading from her system. She finished the Ativan wean today. It had been 24hrs since her last dose when the seizure hit. Diastat, Ativan and B6 shots came next. The shots didn�t stop her but should rebuild her supply and hold her while we regroup. I�m expecting that shots may have to be our standard mode of delivery until we get her gut worked out or until the next surgery.

It�s possible that Lydia "just" has a tummy bug, thus the mal-absorption. It hit one of Lydia�s caregiver Thursday and my mom last night but I can�t tell if Lydia is sick or not! The surgeon explained to me that vomiting occurs due to gas pressure building up in the colon. Lydia�s gas goes on out her side so she won't build up and retch anymore. Her stool is already liquid so I can�t identify diarrhea. She has so many different reasons behind crying, so fever is my main sign of illness and that's not very reliable. Her mama has no idea if she's sick or not. We may have to do lab work to find out if illness is impacting absorption.

Lydia did sleep through the night Thursday and Friday. Crying has been a lot less, in fact today it was only when she was put in her chair and fed. The girl has consistently been inconsistent. Food is a comfort source one day and a torture source the next. I know I�m confused!

It�s very late. I�ve spent a long time watching Lydia and talking to my good friend, fellow-seizure mom and pharmacist tonight. I think Melissa was an optimal initial sounding board, to help organize my thoughts for Monday.

I do trust Him. Yet from my limited perspective, it�s been a disappointing day. I had oh so hoped that intervention as radical as this last surgery would make Lydia happier and willing to eat without such protest, because her stomach wouldn�t be distended and hurting. That may still pan out but today screamed when food came near. Then the seizure� Talk about an emotionally charged event. There�s just so much history there and such deep rooted hope that it would stay in the past.

Off to sleep for a while on the couch with my ears open.

Allison

Wednesday, April 21, 2010 10:49 PM CDT

**Edited Thurs morning to add that I'm still hopeful but unclear as to why Lydia woke up fussy twice during the night. This is down from three times, but why? Habit now? Hungry? Her tummy was growling.**

Visits to both surgeon and pediatrician yesterday provided no real theories. Blood work showed slight improvement on the hydration front but also continued rising of white blood cells. We settled in for another night of frequent Lydia waking/crying/medicating after a phone call from a friend. She had a theory that started my brain turning. At 3am when Lydia roused us, I went to the computer to record her output and studied the data.

How many times have I looked at that spreadsheet? Your prayers for wisdom were answered with a resounding yes, when I was totally spent. Significant formula/symptom correlations glared off the screen.

Lydia hasn�t needed or taken formula more concentrated than half-strength in many years to maintain her weight. This is weight-gaining time though so a new goal was in place. The first step up from half-strength was exactly when the urine output declined. Next increase to full-strength was when the crying, sweating, twitching�began. Then when the rate increased, to catch up with dehydration, further deterioration and frequent night waking kicked in. Conclusion: Lydia isn�t tolerating her feeds!

I�ve been asked how the feeds were going many times over and always answered �fine� followed by: Lydia�s abdomen is tiny and soft, her ostomy output hasn�t increased at all and she isn't retching. Those observations satisfied.

We were preparing for a CT scan today so Lydia�s formula was switched to Pedialyte during the middle of the night. I also bumped down her rate to the speed I know she tolerated. Four hours later, Lydia had the first overflowing wet diaper in a week. Proof was backing up my theory.

I typed out my observations and emailed them along with the spreadsheet to the surgeon. He called in agreement and he wondered why he had not pursued the idea earlier. The new plan became 24hrs on Pediatlye to see if symptoms resolved.

The pediatrician was still concerned about the rising white blood cell count. I was given the option of going ahead with an admission to identify additional source of infection, possibly caused by the formula intolerance (blood work, CT scan, chest x-ray) or repeating the white blood cell count first. I chose the latter and the count was down significantly, so we were able to stay home!

When it came time for Ativan Lydia still wasn�t even fussing! I was able to stretch her dose out to the first weaning goal without effort. Lydia only started getting fussy at bedtime, like our girl does on a good day.

Answers and a calm girl meant that I got a great nap. Jason came in from school just as I was waking up and settled in for his nap. We debriefed in passing and I tried to get him to help me with the name of a song that had been going through my mind regarding the relief I felt from today�s events. He didn�t know my song title but offered an alternative �Ding, Dong the Witch is Dead�. :o) He really does love you Lydia but that around-the- clock crying was driving us batty! It was great to laugh.

My guys offer great comic relief. Yesterday, I was just trying to quietly accomplish something in a room by myself when I heard Caleb coming down the hall scheming. �Josiah, I think you want to do something other than play with my toys. Don�t you want to nurse? Mama�s in there.� Josiah toddled in the room signing �please�. Seriously?

So tomorrow, instead of being back in the hospital, I will be cheering on Sophie and Amelia at field day. They can�t wait and neither can I. I have been welling up all day with tears of udder relief and thankfulness.

And the song I�ve been humming is:
Wonderful, Merciful Savior

Wonderful, merciful Savior
Precious Redeemer and Friend
Who would have thought that a Lamb
Could rescue the souls of men
Oh you rescue the souls of men

Counselor, Comforter, Keeper
Spirit we long to embrace
You offer hope when our hearts have
Hopelessly lost the way
Oh, we've hopelessly lost the way

You are the One that we praise
You are the One we adore
You give the healing and grace
Our hearts always hunger for
Oh, our hearts always hunger for

Almighty, infinite Father
Faithfully loving Your own
Here in our weakness You find us
Falling before Your throne
Oh, we're falling before Your throne

But I can�t help but chuckle at Jason�s choice which is now forever linked to this song in my mind.

I snuck in a date with my man tonight too, if you count escaping to the back yard alone for supper. Consider that there were three more adults tending our five children inside. The slightly cool, recently washed air was as refreshing as the quiet conversation.

Oh how good it feels to have your stomach at rest after even a few hours of cramping during a stomach bug. Can you imagine a full week of such pain? Off to smile in my sleep as I imagine Lydia�s relief!

Allison

Monday, April 19, 2010 9:04 PM CDT

I half expected to be taking Caleb for IV fluids today. This weekend a tummy bug hit him hard, just after Josiah. Instead the boys are perking up and Lydia went in for fluids. This girl has been steadily decreasing output of all kinds, despite feeds increasing. She isn�t obviously retaining or shedding, just doesn�t make sense.

Even though Ativan is back on a good schedule, her crying is long and hard. When I hit her with bedtime sedatives, she calms for a little while and sleeps. Then she breaks through and wakes back up in sweat and tears. Her legs are constantly kicking. It all adds up to pain in my eyes.

So, I called the surgeon this morning. While I don�t know that this is a surgical issue, I hadn�t touched base with him since it started and was hoping some fresh eyes might help. He called me back twice, wasn�t at the hospital today but put a plan in action and will see Lydia in the morning. His partner did check on Lydia while she was getting fluids and labs drawn outpatient. He offered to readmit her. I declined.

I had a call in to the medical supply company today hoping to get our first order submitted before our samples run out. I was excited that the latest brand of poop pouch seemed to be going strong. Then on the way out the door to the hospital, it started coming apart. New bag, new wound dressing�well go ahead and bathe the girl! I shudder to think about handling a bag mishap away from home. The company was closed by the time we got back from the hospital, so I�ve still not ordered. This evening�s research has produced a few new ideas, more samples to request. This task just can't seem to get checked off the list. I have to remind myself that God must want me digging into ostomy supplies or it would have fallen into place already. This is not an area in which I�ve ever aspired to be educated. Bring it on though. Please join me in praying for this detail that is having a big impact. I need direction and wisdom, in His time.

In response to the whiny boys and crying girl, I've taken up walking this weekend. It seemed more therapeutic than a shopping trip to buy ear plugs and good for the prayer life too. ;o)

Thanks for journeying with us!
Allison

Friday, April 16, 2010 9:41 PM CDT

The days are all running together. We are definitely going in the right direction but I have underestimated the impact of this hospitalization. It�s taking all I have to keep up with the new stuff, meaning I can�t get back to the basics yet. This morning Amelia was taking inventory: Who cleaned the bath tub? Who brought the spaghetti? What about the cookies? Who folded the clothes? With different answers for each of those questions, she concluded that �The whole world wants to help us.� Growing up as a minister�s daughter, I remember how the church body would rally around our family when we moved into town or had needs arise. Little did I know how God was preparing me to accept such help in my adulthood. Those of you that have prayed and helped out in other ways, thank you!

Wednesday a friend came over with cleaning supplies in hand and a heart ready to love on our boys. I didn�t know at the time that Lydia and I would end up spending several hours at the doctor and lab. How like God to provide childcare before I could even anticipate the need? Lydia had become increasingly irritable, sweaty, twitchy and was doing some really strange posturing. Her B6 has been double, just in case there is a stress-induced neurological component. The expected main culprit though is drug withdrawal. Lydia was getting frequent doses of IV pain and sedation meds in the hospital that stopped cold turkey when she came home. She has been much happier since she was started back on Ativan by tube, for the purposes of doing a slow wean.

It was going pretty well until a miscommunication, which led to a missed dose. I know these things just happen but it�s been a day of trying to make it up to the girl. She still wasn�t singing forgiveness until well into the evening, despite the impressive cocktail she received. The Vest did arrive and just in time to help pacify Miss Fussy. It at least distracts her, buying a few minutes while we wait for the next med to kick in. Oh yeah, it�s been great for her breathing too. ;o)

We are still monitoring input and output closely and increasing fluids, as Lydia�s doing some strange stuff. Thankfully her electrolytes look better than they have in weeks. That info came from lab work drawn at the children�s hospital, same floor as the PICU. There was certainly a moment when I just wanted to bolt in a different direction rather than ride that elevator up the familiar route. I was reminded we were just where we were supposed to be when two of our favorite staff "randomly" appeared. They saw how miserable Lydia was and hooked the girl up with an immediate dose to ease the withdrawal. This meant someone else could go to the pharmacy to fill her script (w/o a wheelchair in tow) and Lydia didn't have to wait another minute to get some relief. I didn�t even know such was a possibility.

Oral feeds are very inconsistent with the drug issues/irritability but Lydia CAN still swallow and the tube feeds are more than sustaining her. Lydia�s weight is already coming up, which is fabulous. Along with the irritability, both Josiah and Lydia were running fevers the past few days. I�ve dubbed them Clingy and Screamy. Their desire for me to just and cuddle has done us all a world of good though. I�ve lost count of how many have yucky noses are running around, and Amelia has a new chipped permanent tooth. The school called to ask if I wanted to come by and look at her mouth, while I was between the doctor�s office and hospital. I decided it could wait.

Jason came home and went straight to the basement attempting clean up from sewage overflow from Tues. He sucked up 80 gallons with the wet vac the first night, more the next day when the plumber arrived to snake the pipes. He�s ready to take the �plunge� and have the yard dug up and pipes replaced so he won�t have to revisit this scenario.

I got a nap yesterday and I think I�m caught up on medical calls until next week. This weather is just amazing and having the kids play outside is saving so much housework. I must not have been listening very carefully when they asked permission to play in the sprinklers but it was another good diversion. I�ll call in more help with laundry if need be. In fact my mom and her friend are coming Sunday for a week. This was planned long before the hospitalization, yet another God-ordained provision. They�ll be helping the winter clothes find their way to the attic and stocking the freezer, as well the basics like dish washing.

Hospitalizations have been part of our lives for almost ten years now. We were often able to carry on and pick right back up after events. I remember just bringing Lydia along to a couples' Christmas party after a hospitalization, administering the emergency seizure med as needed and enjoying the rest of the party. That's what I've expected this time but I'm realizing there are some significant differences. More little people live here now and Lydia is requiring a new record of medical care for the time being. Lack of ambition has never been my challenge, rather realizing my limitations. I seriously had planned to leave Lydia w/ her caregiver and run on to Bible study Wed morning as usual. We weren't ready yet. While I am consciously keeping some outlets, I�m also figuring out that it�s going to take a while to reincorporate some �basics� of a month ago. I need to choose my non-essentials wisely.

We�ve already been provided meals for weeks, so it is humbling to ask, but I'm ready to accept those offers for continued food. Even though Mama and Jane will be here next week, I have plenty to keep them busy aside from supper prep. Tonight's was the last scheduled meal. So a friend set up an online sign up for a bit longer: http://www.mealtrain.com/?id=TAaMH8GqW4Q= (I just looked at it, was hoping for at least a couple more weeks...Jennifer doesn't lack in ambition either. ;o) I'll put it at the bottom too in hopes that a real link will show up.

It�s slow going but good, one of those awesome backgrounds to see God�s glory.

Graciously Sustained,
Allison

Tuesday, April 13, 2010 8:51 PM CDT

It is fabulous to be home. The first night of "no one waking Lydia every two hours to check her temp", she slept eight hours, awoke for Advil, diaper and position change, then slept five more hours. I know that felt amazing.

Being home is definitely our preference, even though it may take a while to find a new rhythm. I didn�t speak up in the hospital and probably should have, regarding learning how to do Lydia�s new medical procedures. The wound care nurse only allowed me to assist. Then my mother-in-law took over this weekend. So I was quite the newbie when teething/allergy-suffering Josiah woke up Lydia early this morning�so she could alert me that her poop pouch exploded on the bed, into the wound, etc.

I suppose one can see the blessing of the wee hour timing, in that I managed to get everything cleaned up and reapplied before waking the girls for school. It would have been nice if it wasn�t just after Jason walked out the door but the boys ended up surviving bed arrest without any visible scars.

Yesterday was largely spent calling manufactures of the medical supplies to request samples, hoping we�ll find a pouch that does stay on 3-4 days, rather than 1. There is definitely a learning curve and I�m thankful that we are not expecting a lifetime of this, only a few months until the surgeon reconnects her insides!

Today was Lydia�s first follow up with the surgeon. He was pleased. We stopped for lunch on the way home and Lydia deteriorated before our eyes. She�s largely slept since we�ve been home but was awake all morning with the outing. I don�t know if we overdid it or what but she was clammy, sweating, twitchy and posturing strangely. I medicated her to my best guesses when we got home and got her comfy back in the bed. She�s been somewhat the same this evening. So I do ask for wisdom and/or resolution of this weirdness. Even if you take the tummy completely out of the equation, Lydia just looks sick today.

We have moved Lydia out of the girls� room into the living room, on a hospital bed. It isn�t glamorous but quite functional. I can check on her at any hour without disturbing others (and change poop pouches as need be w/ no one else the wiser!). While moving her summer clothes into her new room last night I noticed that most of last year�s things are going to swallow her whole. I weighed Lydia since she�s been home. 26.5lbs! She lost 25f her body weight over the three weeks in the hospital. She looks and feels so frail.

Needless to say, I�m in agreement with the surgeon and have been pushing calories with even more fervor since. She is getting more concentrated formula by g-tube 20hrs a day as well as some oral feeds. I didn�t know what to expect, after almost a month break from the later. Once again grace abounded. Lydia was actually fussy before I squirted her applesauce thickened juice into her mouth, then immediately calmed down. She then proceeded to eat a whole mashed banana with her juice to wash it down. She isn�t up to three meals a day yet but making good progress.

Her breathing is still not back to baseline yet either. A chest compression vest was supposed to be delivered today (guess I�ll add checking on that to my list for tomorrow). The vest hooks up to a machine that blows puffs of air into it in a manner that will pound on her chest, major vibration. We tried one in the hospital before discharge to make sure she could tolerate it. She loved it, cried when it stopped. The vest is short enough to end above her wound too, so it shouldn�t be problematic.

Also not problematic are the caregiver hours. I had been very conscious to use as few hours as reasonable during the school year, to save 40hrs a week for the summer months. But her summer just got longer. The assumption is that Lydia will not be returning to school until next fall. I had not budgeted for that. When I finally sat down to recalculate, I found that we have more than enough remaining for 40hrs a week starting now. There were more days when staff called in sick or had kids out�than I realized and they added up to my favor at this end. My bible study had been praying for months that our request for more hours would be approved. God answered differently but sufficiently. Lydia still could be approved for more hours next year. Her needs will be reevaluated next week due to her newly increased level of care. For now, we are set though.

Tomorrow we should be set with formula. It really is easy to overlook the many provisions during exhausting times. I�m sure I am missing many but not this one. I only had a few leftover cans of formula tucked away, since Lydia had graduated to all table food several months back. The hospital sent us home with � a day�s worth and a promise that more was on the way. Four calls and five days later, the new supply should on my doorstep tomorrow�just as my stash will be depleted. This isn�t grocery store formula, rather $35/can special medical-based goods. I thank our tax-paying friends again for your support on that! Lydia�s disability-based Medicaid saves us big time on that end.

Even though she is tethered to the pump for so many hours a day/night, it�s glorious not to have the IV pole for venting like she used to. Jason�s still not sure what to think about Lydia being able to toot out her side but I�m thrilled that she no longer gets a distended abdomen by keeping it in. To that end, the surgery was a great success already. That skinny tummy is finally consistent.

The wound care really doesn�t seem to bother Lydia until I start messing with the goo around the retention sutures. Those will be in two more weeks and since the goo didn�t bother the surgeon, they may just stay that way. He would normally have already removed them but is being cautious with Lydia. They are big, deep, widely spaced stitches, threaded through rubber tubes where they go over the skin, to support the internal stitches. I stuff wet gauze under them, inside the wound to keep it moist so it can heal from the bottom up. He said this type of wound is highly unlikely to get infected, good thing after this morning�s pouch spillage!

There�s no good way to transition from grossness to food but I made some cornbread this weekend and reheated some leftovers to go with it tonight. That�s about the extent of the cooking thus far. We are so thankful for all the wonderful meals friends have provided. I�m eager to get in the kitchen but cereal even fills tummies even during standardized testing week just fine. Baked goods and the resulting dishes will have to wait until after Lydia�s care is in order. In fact, I have come to really appreciate the lifestyle we had been able to have prior to this event. Granted, we already opted out of soccer this season, for much needed simplicity (thank you Lord!). It�s always busy but we were accomplishing a lot of things that are just impossible with a child in the hospital.

The kids aren�t missing soccer. They just want to play outside and take baths, easy to please and far less stressful. It�s been beautiful weather. We are eating supper out there, soaking up a little sun and saving the kitchen floor a few crumbs. When Lydia starts having more waking hours, I�m going to be sending her on walks too.

Still HOME, thankful, exhausted�
Allison

Friday, April 9, 2010 9:16 PM CDT

Lydia is home!!!!!!

Amen,
Allison

Thursday, April 8, 2010 1:55 PM CDT

My mom is sitting at bedside, giving me a longer break before they leave tomorrow. She called me when the surgeon came by and mentioned his plan of "just one more week watching these feeds and we should be able to get Lydia home". Mama knew I had other thoughts.

After Dr.Weidner and I talked about what I�m comfortable handling at home (transitioning back to oral feeds, finishing the IV anti-fungal via port...), he admitted that he's running out of reasons to keep Lydia there. From the lung standpoint alone, getting her off monitors and keeping her out of the bed will be the best thing for her. It�s a lot easier to rock her in the recliner at home and our caregivers can get back on the payroll to lavish her with attention! The school will be providing a "hospital homebound" program too, sending her next year's teacher out for 3 hrs a week to work on school goals. Bottom line, Lydia will not be wanting and we as a family are ready as soon as she is.

Lydia needs to:
*wean off high flow O2 (halfway there)
*tolerate formula transition (1/2 strength this afternoon, full strength tomorrow afternoon�IV nutrition is down to just lipids/fats�almost done)
*resist further infection

So keep praying this girl out of there!

Allison

Thursday, April 8, 2010 8:50 AM CDT

Lydia had another good, uneventful day and night. Kidneys are getting a more appropriate share of the output. Feeds will be bumped up again this morning. Dare I start to dream about freedom???

Wednesday, April 7, 2010 8:23 AM CDT

Feeds are slowly but successfully increasing. Today Lydia�s moving up to an ounce/hr pedialyte, half her goal rate. Tomorrow I think the plan is 45cc/hr of half strength formula. Lydia enjoyed a visit from her beloved teacher of the past four years too. Mrs. Potts only cried a little, once. ;o)

Another potential setback started to raise its head though. The decision of a couple days back, to hold all Motrin�so any new fever wouldn�t be masked, made for much more difficult pain management. Lydia started requiring a lot more IV pain meds as well as sedation to keep her comfortable. These drugs are just so short acting. Due to all those meds, Lydia was largely still. Due to being still, her lungs got junkier. She has been febrile once a day the past two days. Blood work does not indicate infection. The assumption is that she�s teetering on pneumonia.

Lydia has already been on so many big gun antibiotics recently, that the hope is to resolve this without additional medication. Respiratory treatments have been restarted, CPT, EZPAP and deep NT suction. If Lydia were able, they�d also have her walking, to keep the stuff in her lungs moving out. Our next best option is getting her up in the wheelchair. She actually looked comfortable in there yesterday, for the few minutes between me delivering the chair and x-ray coming by to take some pictures. We�ll try again today.

The intensivist would also like some strong coughing or crying to benefit Lydia�s lungs. A sedated child does neither. So last night�s plan was to offer less meds in hopes of some good crying. I was glad Jason�s mom was there to advocate in case it came to that. Even though I had a great night of sleep there Mon, I wasn�t sure how much I still had in me emotionally. While I do understand the concept, mama�s not down with her baby being in pain. I briefly updated to this end last night but somehow didn�t save it. Even so, your prayers covered our girl. She slept well with just her bedtime sedations!

Grandmommy also reported some good coughing. Even after waking this morning, music and Lydia�s vibrating pillow calmed her in the absence of pain meds.

So thank you for your past and continued prayers! I think we are on the home stretch which always makes patience harder for me.

In His time,
Allison

Monday, April 5, 2010 12:19 AM CDT

It�s a new day in the PICU. Nothing looks different on the surface but the expectations are great. The surgeon (have I mentioned how much I like this man?) sat down and allowed me to talk out all my musings of the weekend. He took my observations, added his wisdom, and came up with a new plan.

Let me back up. The last intensivist had Lydia taking 1 oz of pedialyte over an hour, then pump off for two hours. Since she has a feeding tube, they could check stomach contents to see if that pedialyte was still hanging around (check residual). If the stomach was empty, repeat the process. If the pedialyte was still present, skip the feed and check again in three hours. Last night they had to skip two feeds in a row. That�s nine hours for one ounce of pedialyte! Or so they thought.

I mentioned that speed and style of reintroducing feeds were different after Lydia�s pyloraplasty (an abdominal surgery several years back). A lightbulb went off. He had forgotten about Lydia�s pyloraplasty, which changes how he interprets this weekend. The pyloric valve typlically serves to keep intestinal contents from migrating up into the stomach. Lydia�s opening cannot do that, so what has looked like bile on residual check very likely was bile rather than pedialyte.

This is so encouraging to me, after a seemingly fruitless four days with no progress in site. She may be handling the pedialyte just fine. Her feeds have been switched to continuous, 2 teaspoons an hour, with orders NOT to check any more residuals. If no abdominal distress is evident, we�ll progress with greater volume.

The other big thing we cleared up was the nutritional status issue. I understood that the labs and Lydia�s poor response to the first surgery were due to long term poor nutrition. I couldn�t understand as I�d worked so hard on her nutrition the past six months. This is not what the surgeon meant. The markers he was going by gave a picture of approx 24hrs back. Lydia had been on pedialyte 2 days prior to being admitted into the hospital. Of course they showed a depleted child. And yes, he�d like a few more pounds on her before the next surgery. We can do that though, by supplementing overnight through the feeding tube, on top of whatever she takes by mouth.

The glorious summary of these two major points is that Dr.Wiedner does not expect Lydia to go home on IV nutrition at all. When I shared that another physician, who knows Lydia well, had predicted such he made a quick comment about someone�s spidey-sense being off. ;o) He is concerned about staying on top of hydration with the colon out of the picture. (It absorbs liquid out of the stool.) But hopefully we�ll be able to stay on top of that and keep Lydia well the next few months, until time to reverse the ileostomy.

Much Encouraged,
Allison

Sunday, April 4, 2010 10:36 PM CDT

I took the weekend off, kind of. I stayed home and napped, while grandparents swapped off shifts with Lydia. Jason and I even managed a dinner out by ourselves. During this time Lydia plateaued. Another attempt at restarting feeds has been painfully slow. She is digesting pedialyte�one ounce every 3-6 hours. I�ll be asking the surgeon his take on this tomorrow. She has to get nutrition in some form, IV or feeding tube (by mouth is strictly a home goal). The plan is to stay in the ICU until she can be weaned off all IV nutrition. Will this transition pick up once her gut kicks into gear or should we start decorating the walls?

Lydia�s kidneys do seem to be improving, lasix wean is almost complete and she�s peeing some independently. Her white blood cell count has been going up, which raises concern about possible new infection. Motrin was Lydia�s only longer acting pain med. It has been taken out of the mix to keep from masking possible fever. Pain management has been more challenging with just short-acting IV meds. Restarting one of her bedtime sedations from home has made for more peaceful nights though.

The most significant gain from last week to this is Lydia�s respiratory status. She is breathing well with no support now. That certainly takes her to a more stable status but Monday discharge is most definitely not happening.

It was great to be home with the rest of my family. It�s satisfying to be next to Lydia�s bed, listening to her breathing as well. This journey is full of hope because of our Risen Savior. I didn�t have time to do Easter eggs or new dresses this year. We were able to take in a marvelous worship service. We celebrate the ultimate victory, while continuing to pray for Lydia�s earthly restoration.

Thank you for your continued love and support.

Allison and Crew

Friday, April 2, 2010 4:13 PM CDT

Lydia is most definitely on the road to recovery, even though it may be riddled w/ speed bumps. Yesterday she was making rapid strides. Overnight there were lots of little setbacks. At this point though, she�s still in ICU because she�s complicated rather than because she�s critical. That was not the case just Wed!

Lydia even had her full voice and attitude on yesterday afternoon. She was very opinionated about which position she wanted. In retrospect, we think the broken seal around the wound vac led to painful stronger suction. That�s fixed and we are being more aggressive w/ pain meds as well, so she�s had less need to fuss.

The ostomy pouch came off last night, leaking stool all into her wound. Even if she were not still on her antibiotic, I�m told the body can fight against such because it is an open wound. It�s just amazing that it can flush out the contaminants on its own. No reason not to help it out though, so it was flushed multiple times with saline. The bag came off for a couple reasons, the leaking under the vac dressing compromised the adhesive but also, Lydia had excessive output from her ostomy overnight which weighed it down. She was started on pedialyte by tube yesterday morning, followed by full-strength breast milk. One obscure benefit of being a medically fragile kiddo with lots of younger siblings�mama tends to be lactating whenever she undergoes GI surgery, so Lydia can ease back into real food with baby steps. (You should see the looks of medical staff that assume Lydia�s an only child with a mama still pumping! ;) The reintroduction was just too fast though and her gut is dumping. So, she�s back to all IV input for a day of rest before we try again.

For two weeks we�ve been trying to get output up, to equal input. Last night output was twice input, from the wrong hole! So�it�s been a day of bolusing her fluids and looking for pee. A catheter is likely in her near future.

On the positive side, the reason why I say Lydia is no longer critical, respiratory progress has been great! Lydia is breathing well with no oxygen and treatments only as needed, about once a shift treatment. Those treatments are because Lydia doesn�t like to cough. She is strong enough now and clearing those lungs great. She just needs a little encouragement once and a while. I�m sure it hurts.

So it�s been a slow day for Lydia. I�ve made good use of our time by advocating on random long term issues. They are still working on a hospital bed to meet us at the house. We are talking about nutritional supports to make sure Lydia is stronger for expected surgery to reverse this ileostomy this summer. One aspect will be more frequent labs, which will help us justify supplies to flush her port-a-cath. This has been an insurance issue for a while. I even got to talk B6 dependency more today, one of my favorite awareness topics. When Lydia started this first presented with seizures at a week old, they did not try B6 on her here in Macon. I�m told that now they do, for every seizing baby. It�s good to see her impact. I was also able to share about a lab test available, for an acid level that correlates with this diagnosis. It�s been a good day of building report that should continue to benefit Lydia in the days ahead.

Huge steps foward and baby steps back.

Resting,

Allison

Wednesday, March 31, 2010 3:08 PM CDT

Hallelujah, Lydia is finally on her way back up!

This hospitalization has been very different from ones past. Even during those early on, when Lydia was far less stable, her resilience kept everyone on their toes. Instead, this time, at every turn she was literally falling apart and just taking the hits with no resistance. I was not the only one hesitant about the less cautious plan brought with the doctor rotating on yesterday. He went ahead got Lydia off the vent, rather than allowing her another day to rest. It hasn�t been easy to keep her off but they�ve done it. And she looks like a totally different child this morning, decrease swelling aside. It�s as if she has her fight back.

The breathing interventions right now include Lydia's long beloved CPT (someone beating on her chest), high flow O2 and EZPAP, similar to CPAP but intermittent. You would think its spa day how her body relaxes with the treatments. I haven�t gotten in her face to see but based on her body language, I suspect her eyes are rolling back in her head. She loves it. I can�t believe she�s at this level of comfort on exponentially less pain meds too.

She still lets us know her displeasure when adhesive is removed and during wound care. Lydia is on a wound vac, which will speed up healing and decrease frequency of gauze changes. The tape over it is clear but even with that, it just looks �less-wrong� now that open air isn�t hitting it. I�m a pretty tough cookie but had to look away a few times as my stomach flipped watching gauze being pulled out and stuffed down into the wound. It�s not natural but I�ll be able to do it at home. Jason assured me he�d do ANY other helpful chore during wound care time, as long as he can be in another room. I don�t blame him. The kids were eager to see the �gross� pictures I brought home and soaked up the info. There was already no going back on warping them so why not.

The general consensus is that we�ll be here a couple more weeks. Dr. Optimist predicts discharge Monday. With Lydia of yesterday I�d say no way on Monday. If she�s truly back in the fight, while I am not inclined to name a day, I certainly will enjoy the show. Kidneys are still a significant issue as she�s only peeing immediately after lasix doses. The NG tube that was draining her stomach contents has been pulled, so we are one step closer to using her digestive system. Cultures from the wound came back positive for ecoli and yeast. Antibiotics were already on board for the former. A 14 day cycle of IV anti-fungal was started yesterday for the yeast. Lydia�s fever has been high with Tylenol but is lower today on Motrin.

Jason is getting a good dose of being Mr.Mom, single-parent-style. I know the kids love it, despite Josiah�s displays when I run home. He is still my nursing baby though. Jason�s quickly learned what a relief it is to have pretty weather, so they can dig through the dirt and play in the yard all day. He is getting a break today by way of our high school calculus teacher (and more recent past Jason�s department chair). She arrived at the house like Mary Poppins with a bag of games to play. It is just amazing to see who all God is using to support us though. My parents will be here Friday to help for a while and meals are going strong from friends. God is providing day by day and I�m looking forward to tomorrow!

Psalms 31:19
How great is your goodness,
which you have stored up for those who fear you,
which you bestow in the sight of men
on those who take refuge in you.

The prayer warriors have been busy and God�s glory is radiating.

Praise Him!
Allison

Monday, March 29, 2010 3:45 PM CDT

Here�s the nitty gritty:

Calling on Jehovah-Rapha, the Lord who heals. Lydia is stable but depleted and vulnerable. Her ability to heal is greatly compromised by her nutritional status, thus the initial failed surgery stitches and her first ever bed sore. She is resting on the ventilator (2-3 days), with a burly open wound (1-2 months), an ileostomy (2-3 months), and a new central line (for IV nutrition). The collapsed lung is improving with the ventilator. Lydia is very puffy�kidney function is poor. No catheter yet due to infection risk and skin condition (last one left an open sore from rubbing). The staph infection is gone but additional antibiotics have been added to cover the bowel spillage discovered yesterday. It�s a quiet room other than the beeps to refresh the bank of pumps. I am working on getting a hospital bed for the house, to ease the dressing changes� when Lydia is discharged, no earlier than next week.

Here�s my heart:

I love to dive into fiction but don�t often divulge, because I binge when I do. Last week was no exception. A pair of novels finally got off my shelf and followed me to the hospital. After a mere four days I was out of reading material. The escape was nice but being that they were Christian fiction, there was also reference to scripture. The main thread throughout was John 16:33.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

Being Lydia�s mother has forced development of my eternal view like nothing else. Hope in things of this world is so fleeting! This isn�t to say I don�t get distracted and overwhelmed by the here and now. But I gauge some maturity by a shortened �coming around to the truth� time.

The events of this weekend were not what we wanted for Lydia. Over the past few years, we went to Savannah and North Carolina for additional medical opinions, preformed daily involved interventions, spent untold hours and funding on therapies and caregivers to promote feeding�for the purpose of finding comfort for Lydia while avoiding an ilesotomy if possible. Even at the beginning of this event, we were vigilantly giving rescue treatments and seeking medical opinion regarding Lydia�s status.

Today, Lydia not only has an ileostomy but has experienced much pain and sickness in the process. We have come to this end after so many gains in the other direction. Tuesday�s surgery gave such hope in our desired outcome. Talk about emotional whiplash!

Backing up from John 16:33 to earlier in the chapter, it helps me return to that eternal perspective, knowing that Lydia�s life here on earth is but a moment compared to eternity.

20 I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy. 21 A woman giving birth to a child has pain because her time has come; but when her baby is born she forgets the anguish because of her joy that a child is born into the world. 22 So with you: Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.

God may still be providing some form of our desired outcome. By the beginning of next school year it is expected that Lydia will be healed up from a reversed ileostomy and eating by mouth. In a mere few weeks, Lydia is expected to be comfortable and free of any more abdominal distention. While we will rejoice over each of these reliefs, there will continue to be trouble in some form. We aren�t HOME yet.

I drove back to the hospital last night in the rain. It was as if God was crying over me. Our pain doesn�t escape him. My tears stayed damned up until this morning in the shower. All I could hear while I sobbed were the words to Great is Thy Faithfulness, my late grandfather�s favorite hymn.

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

Refrain

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

Refrain

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Refrain

Amen!
Allison

Sunday, March 28, 2010 7:32 PM CDT

Ileostomy is in place due to bowel leakage. Lydia will be on the vent for at least a day or two. Hopefully I'll get the time and energy to share more soon but the priority is lots of quiet rest in our room tonight.

Thank you for your prayers!
Allison

Sunday, March 28, 2010 10:35 AM CDT

Just gave phone consent for emergency surgery and headed back to hospital. Lydia's incision is open all the way down through the muscle. They hope to flush the colon, rule out leaks from previous surgery (unlikely) and reclose more aggressively. If leak is found, an ileostomy may be necessary. Lydia's right lung is collapsed, which may well impact extubation.

Friday, March 26, 2010 11:38 AM CDT

After most of Lydia�s longer, more stressful hospitalizations I have come home and gotten sick. This is the first time I�ve been out of commission while the game was still in progress. A stomach bug is making its way through the adults. Jason is back at school although weak, so he�ll be back to sibling care tonight. My illness started after bedtime and appears to have only lasted a few hours, so I�ll plan on rejoining Lydia tonight. Jason�s mom just left the hospital newly sick as well. Nurse Lisa is providing a little more skilled help than babysitting today by joining Lydia�s bedside in my absence. I haven�t yet wrapped my brain around tomorrow but maybe I�ll be a little more clear-headed after a nap.

Lydia just got an abdominal x-ray to see what�s building in her abdomen and if it could be relieved with a rectal tube. We have permission to start back a little Chloral Hydrate from below if needed to ease the withdraw symptoms. Hopefully between these two angles Lydia will be more comfortable so I can extend our circle of sitters to those less practiced in advocating for pain management. They removed the foley catheter because Lydia had developed a sore from the tube rubbing on her leg. She�s only had one small wet diaper since though so that may be short lived.

Logistics are a bit up in the air but mainly my heart hurt that Lydia�s been exposed to the tummy bug. I�m ready for her to get over this phase of acute recovery and that a virus wouldn�t help. In His timing though.

Nap time!
Allison

Thursday, March 25, 2010 9:33 PM CDT

Today put us another day closer to Lydia feeling fabulous. The pain was worse than yesterday though. Her tummy is still soft but getting a little bigger and starting to look red. She just never got settled for more than a few minutes without writhing and crying. We�ve realized that Lydia is having drug withdraw in addition to the tummy pain.

For most of her life, Lydia has only been able to sleep with the aid of nightly sedation, due to her neurological chaos. We tried to switch this drug several years back b/c it was becoming less effective. Two days into the switch it dawned on us that the screaming, sweating�was drug withdraw. Her doctor ended up putting Lydia back on a lower dose of Chloral Hydrate and pairing it with an additional drug for better sleep.

Move forward to this week, B6 for her seizures can be given IV but the rest of her home meds can�t. They were stopped when the gut was put on rest. So Lydia hasn�t had Chloral Hydrate since Sunday night. In light of everything else, no one thought about the withdraw until last night. (We still might not be clued in if Lydia didn't have a smart nurse for a grandmother.)

Lydia�s bowels have only barely begun to wake up and make noise. They aren�t nearly ready to be put to work yet, so Chloral Hydrate cannot be given. They added a third pain med this evening just as I was going �off shift�. Hopefully that provided enough general relief so Little Missy could finally relax with a good long nap.

The best news is that we get to keep the port. The staph infection is one that should be easily resolved with the drug already on board. But the lower doses, for kidney�s sake, were not successfully up to therapeutic range today.

The kidneys are still struggling, although no infection was found in a urinalysis. Input and output should be about equal. Last report had the ratio at 3:1, a ways to go.

The electrolytes are mostly back in range but frequent tweaking is still taking place for the outliers. Lydia started receiving IV nutrition last night too because she hasn�t eaten since Friday morning.

So in summary, Lydia is on the path to healing, very stable with a great outcome expected, but still definitely an ICU patient.

Peacefully Exhausted,
Allison

Wednesday, March 24, 2010 10:23 PM EST

Lydia had a much more peaceful night and day. Her heart rate is lower, fever minimal, and pain well controlled until late afternoon, when she started coughing. It�s a catch 22. Being flat on her back is a set up for congestion to settle. Coughing is the best defense to prevent lung infection. So we welcome the same action that brings her to pitiful crying.

A second culture confirmed the staph infection but it hasn�t been specifically identified yet. She is getting a broad spectrum antibiotic, slowly. With careful intervention through the night Lydia�s urine output finally started to pick up. Her kidneys are still in shock from the pressure of the previously distended colon. The typical course of antibiotics in this situation would overwhelm her sluggish kidneys and do more harm than good. So labs are drawn to verify safety before each spaced out dose.

Lydia doesn�t look that sick though, infection wise. The biggest anticipated set-back on that front would be if the culture growth is identified as gram negative. In that case antibiotics would not be effective. So, additional minor surgery would be required to remove her port-a-cath. We do not use Lydia�s port frequently but it has made hospitalizations like this one so much more humane, vastly less needle sticks for labs and keeping basic access in poor quality veins. It�s been a nice accessory for the past seven years and I�m kind of attached.

I�m not attached to the loads of softening and stimulant laxatives Lydia has required all these years. As I continue to think through the ramifications of yesterday�s procedure, it seems perfectly reasonable to expect that we�ll be able to decrease or eliminate these. Amazing.

This week so far has really fallen into place with little effort on my part, regarding managing Lydia care and sibling care. There was laps in coverage today though, so I posted the need on Facebook. This played out as just another sweet blessing, like a hug from above. The coverage ended up coming from someone who's voice I have oh so missed. I came to love and depend on Lisa, as I frequently called the pediatrician's office during the very fragile early years. Lydia�s first nurse drove from Cochran to babysit!!! While this hospitalization has brought back some hard memories and emotions, it has brought back some dear ones as well.

Feeling mighty loved by the body of Christ!

Allison

Tuesday, March 23, 2010 8:48 PM CDT

Jason�s mom stayed with Lydia last night so we could get some sleep. She called when they moved to the PICU, as the staff became increasingly aware of how sick Lydia was. Results of this morning�s gastrografin enema (x-ray study) were back before I was out of the shower. They proved that we were certainly not looking at a primary hydration issue. There was a large complete obstruction in Lydia�s transverse colon, something this surgeon had never seen before (surprise, surprise).

Surgical consent was taken over the phone and we barely made it to the hospital before she left the prep area. As the emotional weight was hitting me, I looked up from Lydia�s bed to catch the eye of her anesthesiologist in the hall, a friend from church. Sweet comfort.

We knew that Lydia had excess (redundant) colon but didn�t know that it was also very unstable/moving around. It had bent back on itself, thus the obstruction. Even a water hose with good pressure will produce nothing if it�s kinked. We�ve had puzzling imaging studies in recent past document Lydia�s ability to pass markers through her entire colon. She wasn�t kinked at the time of the study though. The surgeon believes that her colon has been kinking and unkinking perhaps multiple times a day, with body position changes. We�ve likely been working through partial obstructions for years but unable to capture the cause on film.

So instead of considering the colon worthless and ditching it completely, he took out 75lus 1.5 liters of stool!) but left the end so he could REATTACH the remaining parts. The small intestines are attached to the sigmoid colon so she will still poop out of her God-given hole!

For you visual, less-medical folks like me, basically he took out the green part (including the appendix) and connected the orange to the greenish blue portion just above the rectum:


As a dear friend says, it�s doxology time! Praise God from whom all blessings flow!

The hope is that Lydia will be a new girl, without the distention, discomfort and frequent irritability due to obstructions. Little does she know I already have big plans brewing. For example, physical therapy has been low on my list because her ability to function has been so determined by her girth that day. If she can be steady, stable, with a pleasant baseline, we may see more developmental progress than ever! So get ready to work Lydia!

The hope is palpable but the pain of the process still is too. I don�t mean regrets. His sovereignty is loud and clear in every detail but recovery is not starting easily. Pain management is proving difficult. Urine output is still way too low. One blood culture came back positive for staph. Heart rate and fever are rising.

We can�t wait to see her past the surgical pain and able to appreciate her new tummy. The hospital portion of her recovery is expected to last about a week.

So please keep praying for His glory, healing and mercy in this process as you PRAISE with us!

Thank you for the sweet support!
Allison

Monday, March 22, 2010 9:21 PM CDT

**Update 9am Tues: Lydia is headed back for emergency surgery. Several outcomes possible. Won't know until they get eyes/hands on the blockage.**

Lydia started with a bang, 15 hospitalizations in her first 20 months of life. In contrast, it's been 17 months now since her last overnight stay. Awesome change! But this weekend, despite all our efforts, her tummy grew as output slowed to a halt. By this morning, Lydia was a sight. To the hospital she went.

After a day of fluids, at least her color and urine output are looking better. Her abdomen is continuing to stretch, already at an all-time swell. Imagine 10 months pregnant. Only by the grace of God, Lydia does not seem to be in a much pain as long as she isn�t being moved.

Sweet Provisions of the day:

1-I forgot to cancel with a friend who was to babysit while I ran a couple timely errands. So while we were at the doctor, on way to the hospital, she let herself in and did the dishes!

2-Those errands still got done without me.

3-Jason�s mom was teaching nursing clinical on Lydia�s floor. Talk about attention!

4-I really like the new pediatric surgeon in town. Already he has a little different take on things that is reasonable and welcomed. After additional imaging results come back he�s promised an even more detailed discussion about short and long term options. We need to get Lydia over this crisis but I�m also concerned about how quickly she got so sick and how close to that edge she's been hanging out. After resisting for a long while, I'm ready to talk about different management options.

Somehow, his attention to detail still surprise me.

Allison

Friday, March 5, 2010 7:31 PM CST

The fourth year with Lydia�s same beloved teacher, a year of thriving health, has not demanded much face time from me. So, when I headed to the school early this morning to meet and set goals for next year, I felt oddly out of the loop. Lydia�s goals have been nuances of the same thing since we started therapy as an infant. I didn�t expect news. I was wrong. What sweet surprises were in store!

Eating. Last year, my main role at the meeting was motivational speaker as to the importance of continuing oral tastes, even though functional eating would likely never be seen. This year, I sat back and as we came to �Lydia�s strengths in the classroom� and heard "feeding". She is one of their best eaters! At age nine, we finally met a new huge goal! I know she�s eating at home but how satisfying to see it come full-circle like this into a strength.

Vision. Tracking is going great, the highlight being horizontal tracking at 100 percent. Seriously. The consensus was that they thought I was crazy when I announced Lydia would be wearing contact lenses at the end of last school year. They are gladly eating their words though. Her vision teacher actually has a new goal to attend to objects entering her peripheral field of vision from both sides. The neurosurgeon removed � of the portion of the brain that controls such but they insist that they are seeing her do it. Maybe another part of the brain has taken over that function! I certainly won't tell them not to try.

More Vision. Another one of next year�s goals is to start making choices through eye gazing (choosing between two cards depicting different activities by looking at the one she wants). Auditory and visual were determined as her preferred methods of learning. Visual? This is the child who couldn't see more than a couple inches from her face b/f the contacts. And it was assumed that her brain wasn't processing even what little it could take in. Talk about a year of change! Lydia's teacher proudly watched Lydia track her speech therapist as she moved all around the therapy room this week.

Computer. Lydia�s also making genuine progress in computer time. With a new positioning set-up, Lydia is starting to activate the special switch AND appropriately watch the results on the screen. The technology out there is just amazing. This opens up a lot of great opportunity for Lydia to play and learn.

While the school goals for next year are still mostly the same, I�m one proud mama! I've also firmed up my personal goals for Lydia's summer: switch activation, seating and more efficient feeding.

Switch Activation and Seating. I ache for her to have an effective form of communication, even just the ability to express choices. The successful seating set up at the computer is one I can duplicate at home, which fosters better use of her arms to activate those switches that are collecting dust around here.

More seating. Also seating-wise, I am getting a new wheelchair ordered, one that allows her to move (think recliner, where you can push against the back and it gives). The demo chair trial proved that Lydia was much more productive with this flexibility...didn't waste her energy fighting an uncomfortable static chair.

Feeding. Lydia has an appointment with a new speech therapist next week, to implement new techniques for speeding up her swallow. The change was precipitated by Lydia's outright refusal to eat for our newest caregiver. (It was ugly!) While I'm glad for the push to new techniques, Maggie is already doing great now that Lydia has warmed up to her. This was after some focused snuggling and reading time. ;o) Lydia showed us yet another cognitive advancement discerning and relating so differently to people based on her relationship with them. (She likes to give me a hard time too but she is a nine year old girl and I'm her mama.)

Being Lydia's mother isn't the kind of nurturing that I imagined but I am thankful for the privilege of the role. God was gracious in the affirmation and rewards reaped even today, when I least expected them.

Pressing on and glad to report!
Allison

Friday, October 2, 2009 10:51 AM CDT

Today�s to-do list is going to be short. Clean the kitchen and play. The laundry, bathrooms, etc., etc. can wait. It�s too beautiful outside and we are all WELL!

We�re busy living�.lots of doctor�s appointments, therapies, school lunches and conferences, visit from my mom, crawling baby, homework, braiding hair, soccer, sick kids, potty training, Bible studies starting back, cooking, and constant firefighting with the payroll company for caregivers. Jason has been taking a six-week course for officer (deacon) training at the church. This has required significant homework and class a couple hours a week, all wonderfully beneficial. We�ll be glad to see that time freed back up though. I don�t realize sometimes how much he helps�until he�s unable.

Lydia turned nine in Sept. While this birthday marked a better year for Lydia than last, I still almost dreaded it. Not only was Lydia home sick but the day started a new fiscal year for her services. This meant supplies to be purchased and submitted, schedules, justifications, letters and additional requests for next year due, plus a shift from feast to famine in staffing her personal support. We should hear results of my request for additional hours in a couple months, not a moment too soon. Newly eating Lydia is high maintance!

Over the course of the summer Lydia worked up to 6-8 ounces of pureed food by mouth, three times a day! In fact, the feeding pump was demoted to 12hr nights, rather than 20hr a day/night. No more tethers! It�s really phenomenal. Downside? This new skill takes an hour per meal. It is not a multi-tasking job. Lydia is quick and sly with spitting that food out and making a mess if you dare to shift your focus. We�ve had help with most of the meals but cutting back on staffing for now has been challenging. The GI results of this eating are so worth it though. This girl�s colon is working! Meds and venting are still needed but wow!

An ear infection/antibiotic/caregiver out sick (a few tube feeds instead of oral) meant the first impaction in months. The good news to that end was that we have a new tool at our disposal, enemas. Lydia�s colonic tone is so improved that they actually work for the first time ever. So we managed to resolve the blockage without a hospitalization.

We also managed to get through what we assume was the swine flu w/o incident. Lydia�s stint home w/ her blockage ran right into Amelia�s fever, which spread through all the kids, myself and Lacey. For most of two week I had at least four with fever! The kids� symptoms were mostly mild but long. Mine was hard and fast, far preferred for mama who needs to be back on her feet! Today was the first day to send all the girls back to school. The quiet house and cool weather is most refreshing.

Josiah is getting his sleep pattern back in shape after the illness, hopefully. He is also cruising, my earliest child on that front. At 10 months he�s our longest spitter but thankfully it�s starting to taper off. We have let go of the constant bibs and will get to enjoy seeing the necks of his clothes this season. Si is fast, into everything he can reach, constantly smiling and laughing as long as his people are around him.

Caleb is the sweetest all-boy three year old, who is finally taking initative in his his potty trips. He�s playing, hugging, learning, and loving books. Three year old Sunday school is one of our family�s favorites. The teacher puts so much into the lessons and Caleb is soaking it up. His spiritual and other conversational vocabulary is growing, despite his cute annunciation challenges. Since school has started back, he�s told me that he really �Misses the girls� presence.� �What?� �I miss them being around me.�

Amelia was sick the longest, a full two-weeks, poor girl! She still has a cough and yucky nose. Hoping it�ll continue to resolve without further set-back. When she�s there, school is going beautifully for her. Well, she�s still a fickle student, at least partly due to endurance/fatigue. When she chooses to do her work, it�s all good. She is thriving under Mrs. Partain, being mostly cooperative and respectful of authority. Phew! We are very hopeful for continued success this year. I�m continuing to enjoy dear spiritual conversations with my deep thinker too.

Amelia: Why did God make Lydia "special"?

Me: Why did He make you and all things?

A: For His own glory.

Me: He knew this was how Lydia could best bring Him glory. Do you know one way He's been glorified by your seizure disorder? When you were a little baby, God showed the doctors what you needed to stop your seizures and that helped them figure out how to help Lydia. God was glorified by using use to save Lydia's life.

A: So when God figured out what she needed He let the doctors know through me?

Me: Oh no, God made Lydia and knew all along what she needed but keeps some things secret.

A: Like Christmas?

A:How can Lydia go to heaven, since she can't understand or say that she accepts Jesus' payment for her sins?
Mama can we pray about that? Will you pray with me for Lydia's salvation.

Don't you love how God fashioned Amelia's heart!

Caleb's heart right now is Sophie. He was recently disappointed to learn that he can't marry her. She's being a good influence though in her zeal for learning and applying herself in school. Sophie�s teacher is as good a fit as Amelia's is for her. Ms. Beach sets the bar high and Sophie eagerly rises to meet it. I�m thrilled for Sophie to have such a sweet, professional role model that�s �brown like her� too. Both Sophie�s class at school and her soccer team are composed of predominantly black children this year. Sophie is getting to blend in visually, and instead stand out for her hard work and excellence. Its perfect timing, as God always has, being that Sophie is starting to ask very matter-of-fact questions about her birth family and adoption. The terminology to clearly relay what she�s learning hasn�t stuck yet. I understand that her playground talk involves her version. �I have TWO mamas, plus an extra sister far away. Amelia has two sisters but I have three. God chose THIS family for me to be in, so I wouldn�t miss all the cute things Josiah does. I�m so glad.�

Lydia has her favorite teacher for the fourth year. Among my time spent as her advocate lately, one focus has been bus issues. It took multiple phone calls, doctor�s letters, and eventually permission from the state level to get an air-conditioned bus for Lydia this school year. The wait after school for the bus is still unreasonably long but the first battle has been won. When describing the situation to Jason he smiled at me and let me know that I am �one of THOSE parents�. No surprise.

I�m continuing to challenge myself as well, in the kitchen. Starting our first fall garden, discovering new resources, ways to think about what we eat and of course new recipes. My children love lentils and brown rice. Sophie begs for split pea soup too! It�s unbelievable how easy this transition has been regarding the children. I actually made bean brownies last night, which didn�t end up impressing me, but the kids and Jason gobbled them up. They are gone. With all the whole grains and beans, Amelia is off Rx laxatives for the first time in six years. Yeah! I�m cooking for Lydia too, crazy huh? The kitchen even has water kefir brewing in cabinets, as a fizzy soft drink alternative for Jason! Eventually I hope to save some money on the grocery budget too but for now am stocking up on my ingredients and having fun.

So, you see why cleaning the kitchen is my one mandatory chore for the day. The kids are mostly messing up the house while I�m mostly messing up the kitchen. We had left-overs for supper last night but I still dirtied plenty dishes between the brownies, a fig tart (dessert attempt #2, for my sake) and Lydia�s favorite banana muffins.

I�m looking forward to many robust fall meals, for the body and the soul.

Blessings Dear Friends,

Allison

Thursday, June 18, 2009 8:29 PM CDT

*Check out a few new pics in the album.

The kids have a great book named �ONLY GOD Would�ve Planned It That Way.�
It includes gems like:
If I would�ve planned God�s great love-plan for me,
I would not have sent Christ to die on that tree.
BUT God knew my sin needed infinite pay�
You see only God would�ve planned it that way.�

So many of His plans will never make sense to us this side of heaven but some of them are just gloriously beautiful even with our limited perspectives. June has been so glorious around here. Only God could have dreamed up and orchestrated such a time as this!

Lydia has full-time, in-home (paid-for) caregivers!!! God still required diligence on my part, hounding the powers that be up to the deadline. Then He showed off big time! Lacey and Sylvia were the last two to apply but the only ones to get all the requirements met. What a perfect team they make! Once again, because of God�s timing, we are at the end of a fiscal year with an over abundance of unused funding left, thus the need for two employees, to avoid overtime. We are using 60 hours a week. It�s just awesome to have Lydia get so much one-on-one attention, while still being a vital part of our family life.

I get misty-eyed and giddy-hearted when I see and hear what Lydia�s doing all day. Lacey is one of the best dramatic story readers and she is always up for a challenge. I told her we�d try to work up to Lydia eating some baby food by mouth again and tolerating her swing. Umm, I�m going to have to stretch my expectations b/c she successfully worked these activities into Lydia�s daily schedule before the first week was out. She also sat down and wrote out an actual schedule, based on her daycare experience (including special needs kids)! The other caregiver, Sylvia, is a perfect compliment with her nursing home experience (and more recently bus monitor�Lydia�s bus monitor the past two school years!). She immediately noticed Lydia�s tight right hand and started massaging it while patiently waiting for Lydia to activate toys on her tray. Sylvia is also a pro at keeping Lydia calm during activities she doesn�t like, such as bathes. Both bring different strengths to the job and are so loving, joyful, dependable and eager to work.

Can I hear �Amen!� and �Praise Him!�? As if this wasn�t extravagant enough, God orchestrated even more. Sophie, Amelia and Caleb went to Florida with my parents for two weeks. It was amazing to have *quiet time* to train staff, nap a bit, get my house in order, hang out with Jason and just regroup. We really didn�t plan such a shift of ratio to all line up, but just as three kids left, caregivers started and Jason was out for the summer! It was almost like one long date, lots of uninterrupted conversation. I guess you know you have lot of offspring when two kids and a caregiver in the house make it seem empty and quiet! No refereeing, disciplining, picking up after anyone makes for a very different dynamic.

So it�s been almost three weeks now with help and Lydia is eating a whole jar of pureed food three times a day. Seriously, this gal could only tolerate 2oz of formula (dripping through her feeding tube over an hour) for years. Now she�s eating 4oz of food by mouth in an hour or less! Weekly library story time is just across the street from my Moms�s home. On our way I can drop Lydia and her caregiver off for a great-grandmother visit, so Lydia can eat breakfast with Moms cheering her on. Oh how my Grandfather would have loved to see this, but what a blessing that his bride can!

I have to stay on top of tweaking GI meds, but the new food intake is promoting better colon action than ever! The stander is no doubt helping systems as well as the bulk of the food.



She�s tolerating up to an hour at a time, which is amazing both for bone strength, head control and just being upright so gravity can work with her systems.

While Lydia was working hard and getting spoiled the walkers and talkers were living it up in FL!


(Neighbors in the retirement community also got in on the spoiling action!)



The kids took much needed swimming lessons while they were there. Sophie and Amelia are now propelling themselves under the water. Caleb is blowing bubbles, going under to get rings. These are great strides that point to much fun for the rest of the summer. The visit must have also gone well behavior-wise, since my parents were asking to book another visit before the kids were back home. Even my little Caleb didn�t whimper for mama once. I�ve eaten up the affirmation that the years thus far invested in parenting actually shows in our kids. Every mom needs that once in a while. ;o) May these rascals be diligently seeking to glorify God though just as imperfect as their parents!

Part of my time while the kids were gone was spent cooking. Several friends and then my mom made investments in healthier cooking, as in less processed foods. I have been in survival mode regarding energy for the kitchen for a long time. Once Josiah started sleeping well and laundry kinda got under control, I rediscovered my joy for playing in the kitchen and creating for my family. It actually all started with making yogurt, by the gallon, and granola to go on top. No equipment was needed for those. But the next step meant a serious mixer (to keep up with the volume needed for these robust appetites) and a grain mill. My freezer was well stocked in baked goods before the crew came back and I�m continuing to branch out with our food repertoire almost daily.

You would never believe Caleb eats 3-4 bowls of that homemade yogurt and granola for breakfast if you look at his growth chart! The three youngest had well visits today and Caleb really is a shrimp (average height but less than 5th percentile in weight). He recently told Jason that he couldn�t wait until he was big enough to share shoes. Jason sadly informed him that this would never happen at this rate. He made strides in FL towards potty training. Just need him to do the prompting and we�ll be done! Without the diaper bulk, I�m not sure how he�s ever going to keep up his pants.

Josiah, or as Jason would say, Jo-thigh-ah is almost 20lbs at 6mo. He�s all fluffy bottom and legs!


(meeting Jason's grandmother for the first time, when we picked up the kids from FL)

Baby boy has two teeth, sleeping with Caleb in the boys� room and even joins us at the table. It�s an earlier solids intro than I�d planned but Lydia and Josiah split a mashed up banana tonight at supper and loved it.

Amelia had her first cavity filled this week. To my defense, it was a tooth that formed without enamel so we didn�t have much of a chance. Still, as if that wasn�t sobering enough, Amelia�s top front four teeth got pulled at the same time (to make room for adult teeth that were trying to come in but not aligned right to push out the babies)! She�s quite proud of showing off her teeth and prizes, hardly phased by the event. That�s one great dentist! Then again, what would you expect from the same dentist who plucked Lydia�s eyebrows during her recent surgery?

VBS is next week and Lydia will be attending with her caregiver each day. It�s great to know she�ll be able to enjoy the activity yet be able to escape to her classroom as needed with personal attention. I love this chance for her to interact with the children of our church family. I hope to get in a few dates with my girlfriends, something I never found time to do while the kids were gone.

And there's one more fantastic piece of Lydia-news to report. The ophthalmologist asked us to try glasses again after eye-straightening surgery. The glasses took over a month to come in and were effective for maybe one day. Then again Lydia was so mad she had her eyes closed most of the time. Then she mastered getting them off as quickly as we could put them on. On to the good news...

On a providential whim (is that even possible) I asked about contact lenses. Who knew? I got a "yes" and they are working GREAT! Lydia has an extended wear version that only requires removal for cleaning weekly. I do that after her nightly sedation then get help holding her head while putting them back in the next morning. She doesn�t exactly cooperate but it�s not so bad, not even a fuss. She has tracked people walking across the room even, while her eye exam showed her to be severely near-sighted otherwise. Lydia still has some eye-brain issues but obviously sees a lot more than she could. I can't imagine how life changing this must be for her!

We are having a ball living God's amazing plans as they unfold!

To Him be the glory!
Allison

Thursday, April 2, 2009 1:56 PM CDT

The night before Lydia’s surgery, Caleb came down with a fever. That was the start of weeks of feverish, coughing, runny-nosed kids…all five eventually! The coughing was so loud and from every direction around the dinner table that I just couldn’t help but chuckle hardily at the ridiculousness. When mama laughs, everyone laughs, which was a nice family chorus to break into some of the other noise that night.

Thankfully not only has the coughing finally stopped but the two who progressed on to ear infections are now done with antibiotics too. This means all were well to enjoy spring break! What a good thing it is to have a school teacher for a husband. Since we are ALL off, tomorrow a trip to the zoo is planned!

Somewhere between kids getting sick and recovering, my mom was able to come for a visit.

This was strategically planned for clothes change-of-season and consignment time! We worked hard and cleared out a tremendous amount. I even cut the toys in half. As Amelia told her teacher “We’re going to spend more time together as a family rather than picking up all that stuff we don’t need”. I’m thinking simplification will have to become a lifestyle rather than an isolated event. It’s still a mission of mine to make consistent progress in that area. I am looking forward to my consignment check too!

Lydia’s glasses have been ordered but there is an insurance delay. Hopefully soon she’ll be seeing much better! Her eyes look great moving together. We have three more dr’s appointments in the next two weeks, including a second post-op with the eye doctor. One of the others is Josiah’s 4-month well check! How can my baby boy be growing up so quickly?

He loves to have sibling activity swirling around him. Still enjoys being held, but will be satisfied for some time on his own. He and Sophie are hanging out right now as I type. Amelia and Caleb are off for an evening at Grandparents. I think its funny how Sophie’s response was “Yeah, I’ll be the only kid here!” I guess the other two don’t count since they can’t vie for places in conversation.

The prayer request that seems to drag on forever is a caregiver for Lydia. I still have contact with my first choice (great experience with kids developmentally just like Lydia and wants the job!). She has a lot of trials going on right now in her life that are naturally diverting her attention. We need this staffed! Like me at the coughing table, our service coordinator has taken to laughing at the volume of twists and turns we face in trying to get Lydia set up. God’s plans for Lydia have rarely been direct and to the point! The latest progress is that I’ve taken on the role of “employer” for Lydia’s help. The motivation is to get around the need for a CNA license, which has limited our options significantly. I do think this is progress, although it comes with another learning curve…and still requires having an employee! Fiscal year starts over July 1st and we need to use up some funds to justify request for more next year. Thanks for your continued prayers to this end.

Our two May birthdays (Caleb and Amelia), then summer will be here before we know it! It’ll be sweet regardless but oh how I want Lydia to have one-on-one care while we live up the simple pleasures together. (I'll be back to post some pics of such soon.)

Still thankful and blessed!
Allison

Wednesday, March 4, 2009 3:22 PM CST

*Note James McNeal�s link at the bottom of the page.

I don�t want to forget the many sweet blessings we experienced on �Surgery Friday�, so here is the detailed account.

Our friend Nancy arrived at 7:30, to help me get out the door smoothly then wait with Sophie and Amelia until the bus arrived. This meant Lydia was able to have a bath to start her big day; we kept order and got on our way on time. Perfect! I also had the clean clothes sorted into baskets, four mounding baskets. Another dear friend, Jennifer, had offered to come get them�and return them folded!!! She put homemade chicken and dumplings in the refrigerator too. Are you jealous yet?

Caleb had spent the night with his grandparents. Since he woke up early, they went to Waffle House. John brought me breakfast while Beth dropped Caleb off at Tammy's, yet another friend collaborating to make this day perfect. John, Beth, Lydia, Josiah and I were then off.

That last minute appointment before surgery, the one I had bemoaned, turned out to be a nice time for my in-laws to meet the eye doctor and connections to be realized. We figured out that the nurse is related to one of the special ed directors at the girls� school, needless to say, we know her well.

We left Dr. Brooks' office with plenty of time to get to the surgery center. I went looking through my bag for Lydia�s EMLA only to find an empty box. This simple numbing cream prevents pain for Lydia when I stick the needle into her port-a-cath. I bring our own supplies to access her port whenever we go to the hospital, because I�m used to meeting resistance from anesthesiologists in regards to using her port over a standard IV. It is in Lydia�s best interest, so I just plan on doing it myself before they take her back. I know how hard it is to get orders for EMLA and didn't have it in me to start picking little battles so early in the day. Beth charged forward and she triumphed! Lydia had her advocating team in full force.

By the time we made it to Lydia�s room the cream was already there from pharmacy! The room was set up for two patients but we had it to ourselves for the day. Lydia had a standard bed AND there was a crib, which made a perfect napping spot for Josiah. The anesthesiologist was probably the nicest we�ve ever worked with. He was eager to use Lydia�s port and just plain reasonable. He had common friends with my in-laws as well. This would be a theme of the day, one of us had some kind of connection with most everyone involved in Lydia�s care. The air was so warm and friendly.

Next in was the dentist. She had no other cases so she hung out with us, visited, held Josiah, and then had us watch her purse while she was in the O.R. Dr. Murphy asked if there was anything else we needed to do while Lydia was getting her make over. I jokingly mentioned that one of Lydia�s former therapists used to ask if I was ever going to pluck her uni-brow. Little did I expect the call from the O.R. later, asking if I was willing to sign permission to allow Dr. Murphy to pluck! What a laugh we had over that and she really DID IT! She called me at home later to check on Lydia and to tell me she�d seen a really safe/easy razor at a salon in Atl. In case the brow grows back, she was offering to get Lydia one. :o) Talk about service!

Even hungry leading up to surgery, Lydia was very content. They started just an hour after schedule. The ear portion went fine. The dentist not only cleaned her teeth beautifully but also took Lydia�s first dental x-rays, sealed molars, and applied fluoride. Naturally we left with a new toothbrush and floss. So all is right in the world. Eyes were examined and new Rx determined. Lydia is VERY near-sighted, which is good to know. Dr. Brooks wants us to try glasses again. Hopefully Lydia will be more compliant this time than she was when she was three. The inner muscles on both eyes were removed from the eye balls and reattached further back. When under anesthesia, eyes naturally roll out, so ironically Lydia�s looked perfect just before the procedure began.

Even the post-op nurse was a friend of the family and one of the scrub nurses was a former nursing student of my mother-in-law as well as an acquaintance of mine from high school days. Macon may be a small town when it comes to who knows who, but I also know God was just taking care of us through all the details.

Lydia woke up fine and we wrapped up the day with a trip by our trusty pharmacy to fill the heftier pain medicine, which she never ended up needing. It was just humorous that the pharmacy tech was one of the few people that day that we didn�t know. She was obviously very new, asked if Lydia had ever filled anything there before. She could not believe that I was so calm about the billing glitch either. That�s part of Lydia�s regular care and why we frequent a pharmacy that knows us, sends us on our way and gets it worked out later.

Grandparents begged Lydia to their house so she could have some focused attention during her recovery. Their large screen T.V. was a great exercise for the newly coordinated eyes too!

The hours of waiting during the procedures did provide time for reflection. Lydia�s first two years involved so many medical battles. Advocating for her was intense. Medical politics was maddening, such as residents scared to call their attending because they didn�t believe us when we said Lydia was gaining momentum down a slippery slope�then ending up in preventable life-threatening situation hours later. Such scenarios happened over and over again. The contrast of such a seamless, friendly, cooperative day was humbling. God was in control with both dynamics, yet to grant us such a peaceful experience Friday was gracious indeed.

It was almost hard to believe how exhausted I still was by Friday night. Granted it had been a busy week! I took down Sophie�s hair Saturday but petered out after that. It was just perfect to get a snow day Monday, an extra full day with the kids AND Jason around, so I could get a new style back on that sweet head.

And the kids sure didn�t mind the rare GA snow either!


Thanks for celebrating this experience with us.

Praise Him,
Allison

I know I waxed on forever already but I realized that I never even explained how amazing it was to get all these doctors together!

Our beloved Savannah ophthalmologist stopped doing operations just before Lydia�s eyes stabilized with patching to deem such. So we checked out our options and found this relatively new eye doctor in town. Proximity made it possible for coordination with the ENT.

The first round of pre-op appointments led up to a date that didn�t happen. Due to the mishap, the eye dr felt bad and rescheduled on a Friday instead, as she knew that was easier for me. By that I mean it�s my in-laws day off. Turns out it�s also the dentist�s. Providentially the new date landed a week and a half after Connor's mom had the same dentist urge her to keep in mind that she�d gladly clean our special needs kids� teeth under anesthesia if they were ever getting something else done. Then Kellie thought to tell me. Any one of those dominos falling differently would have wrenched such a coordinated outcome. Sweet huh? I'd say my God is into details!

Saturday, February 28, 2009 8:08 PM CST

Here's a picture of Lydia from the first day post-op.



The eyes aren't perfectly together in all the still shots I took but they are MOVING in unison for the most part. You know, both to the left when she hears a noise from that side... This is a huge change, very exciting!

She's been very content today at "camp grandmommy's", soaking up all the attention.

Still thankful!
Allison

Friday, February 27, 2009 6:55 PM CST

I don�t have it in me tonight to chronicle the detailed blessings of the last 12 hrs. They were just amazing though. Lydia did great and all are pleased with the results. She is in some pain but it�s manageable thus far. Thank you for your prayers! God showed off today over and over and over again!

Is 8:00 on a Friday night too early for ME to go to bed? :o)

Savoring His Sweetness,
Allison

Thursday, February 26, 2009 2:24 PM CST

Sanctification through doctor�s appts, that�s where I am currently hanging out. I groaned when I counted up 10 appts for Lydia in three weeks time, mostly related to what�s now a three part surgery tomorrow. The cooperation that brought this event about is miraculous and so gracious! I should just be grateful right? So how in the world does frustration and entitlement over the details still well up? Can I grow up already?

The time from groaning to heart-check/attitude adjustment is shortening, thus the proof of sanctification, albeit slow. I was reminded that God made me for His glory. He made me Lydia�s mom. Appointments are part of that job. So sitting in a waiting room�is where He�s called me to be. I�m to embrace it and glorify Him in it rather than resent not being able to be somewhere else at the time. His ways are better than my ways. He does not promise to cater to my agenda but He does promise good things.

So I put on my sanctified big-girl britches and asked for prayer to flesh out this understanding throughout the weeks and years to come. Much to my surprise, God immediately removed some of the load! Lydia�s dentist agreed that she�d add on to surgery day to seal Lydia�s teeth and give her a good cleaning while she was out. Dentist appt was no longer. The anesthesiologist didn�t think blood work/trip to the lab was necessary. The pediatrician even had cancellations so we could head on over after the ENT appt, rather than kill two hours between. God deserved my praise whether or not he chose that kind of mercy but thank you God! So, I settle in to this kind of �response to my obedience� and walk into the door from the last of these pre-op appts to a blinking answering machine. �Would you mind coming to the office before surgery tomorrow for ONE MORE appt?� Will my knee-jerk response ever be right this side of heaven? I hope so!

It seems like God often reinforces what He�s teaching me by bringing it up from different sources. This topic has been no exception. I�ve recently come across others that probably discuss it better than I do, such as count it all joy. And another blog that included the following by Annie Johnston Flint, while discussing how we shouldn�t flee from suffering. His provisions enable us to shine with His reflection through *anything* He calls us to do.



He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase;
To added affliction He addeth His mercy;
To multiplied trials, His multiplied peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources,
Our Father's full giving is only begun.

Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.

His love has no limit; His grace has no measure.
His pow'r has no boundary known unto men;
For out of His infinite riches in Jesus,
He giveth, and giveth, and giveth again!



All that rambling to say that surgery starts tomorrow at 11:00am, ear first, teeth next, then eyes. Thanks again for your prayers and continued interest in our family. Consider the verses below my words to you. So glad He doesn�t give up on us, even if you are like me and it takes 8 years of a repetitive activity to have a duh revelation into it�s spiritual significance.

Phil 1:3-6

3I thank my God every time I remember you. 4In all my prayers for all of you, I always pray with joy 5because of your partnership in the gospel from the first day until now, 6being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.


In Him,
Allison

(Before I could finish posting this the hospital called. Turns out that extra appointment is going to be at a very reasonable hour. That's what I was getting worked up over? :o)

Friday, February 6, 2009 11:08 AM CST

I�m scattered so I need a rough format. How about words, cute kids quotes, then pictures?

I sat down to write a journal entry three weeks ago now, to tell you how smoothly life was humming along. Even getting everyone off to school was just working well. Then the bus moved up � hr without notice and my mom went home and whoa! Humility came spiraling down upon me. Help folding laundry and a good dose of scripture were instrumental in setting me back on course when the course seemed impossibly steep. And yes, I suppose it is in my strength. So thankful for the body and for my Heavenly Father!

A highlight this week has been meeting the lady that I *really* want to provide care for Lydia. Working on logistics and praying for provisions to allow a quick hire! If this works out, the layers of obvious providence I�ll get to share are so many they�d satisfy most any appetite for a good God story!

Other news regarding Lydia includes a surgery date of Feb 27th. The ENT doctor actually said I was �the bomb� for getting this dual surgery coordinated. Not sure if that ranks above or below my mama saying I�m cool. :o) Anyway, thankful to be able to make the most of putting Lydia under. One benefit of the surgery that the eye doctor mentioned is potential for restoration of depth perception. This could really help Lydia�s hand/eye coordination. Now that would be very cool indeed!

Despite the overwhelming laundry and inability to keep up with household stuff, we have been especially enjoying our offspring lately. They have had such sweet spirits, just a joy to be around. Oh and Josiah is sleeping great, 7-10 hr stretches at night!?!?

Thank you for your continued prayers for Amelia�s school behavior. God has been gracious and she�s making great strides. It became evident that Amelia�s biggest trouble has been in the afternoons, when she�s tired. Making arrangements for more naps has helped. It�s also been a win/win situation to move horseback therapy from before school to an after lunch spot. She�s thrilled about getting out of school early one day a week and is much more cooperative with therapy too at that hour. She had her first full week of �good notes� week and boy did we celebrate! Today will hopefully make two weeks out of three with such results. Jason and I are also learning how to better help her reel back in when her heart gets off at home. Again, thank you for your prayers! A month of panties at school with only one accident too! Amelia�s on fire!

QUOTES
Amelia: �Aunt Laura, look at my new belt. We hope this one will last longer than the others. I think it will last until we go to heaven or hell.�
Laura: �I�m going to heaven. Do you know where you are going?�
Amelia: �Oh, I�m going to heaven too. I accepted payment for my sins. Don�t you like my belt?�

Caleb: �Me not gorgeous child. Josiah a gorgeous child.�
If you tell him he�s a cutie, his response is: �Me not a cootie, Doe Doe a cootie.� These days, Caleb calls Sophie �Doe Doe� and Amelia �Mia�.

Sophie: �Daddy, when I grow up I want to marry someone just like you.�
Jason: �Why?�
Sophie: �So I can be just like mama!�
Jason: �We�re not corn on the cob. You don�t have to butter us up.�

I�ve been talking about trying out a flat iron to temporarily straighten Sophie�s hair, give her some style variety. Sophie�s best friend from school has naturally straight hair (she�s tan, not black). Sophie was so excited about the thought of having the same hair as Sayward. �But if we both have straight hair, it might be hard for anyone to tell us apart!� Earlier in the year, Sayward convinced Sophie that she needed to wear more sunscreen so their skin would be the same color. :o)

I�ve become well aware that we cannot manage a lot of everything. Kids trump stuff for sure, so less stuff is definitely more for this stage of life. I couldn�t resist cleaning up my huge Barbie stash from my childhood when we found it in the attic.

Still, I�m afraid some of my tired sentiments have rubbed off on the kids in a way I didn�t suspect.

Amelia�s response to houses with fabulous Christmas light displays: �Oh my word! That looks like a lot of work!�

Life right now is a lot of work and lot of joy. I think I can sum that up best with PICTURES.

First boy bath!


How fun to share laughter with great-grandmother!


Caught all three playing together peacefully. :o)


There are benefits to having a sister in a wheelchair�a ramp being one!



Josiah�s already rocking the exersaucer.


Nancy Guthrie retreat was wonderful!


Since I shared my tear stained face above, I�ll also share a more flattering pic of my new �do.


Check out my beautiful nephew Joshua (Jeff�s son):


My vintage Barbie Dream House:


I�ll end with a picture of sweet Boo with that left eye wandering�hopefully not for much longer!


Blessed and Busy!
Allison

Tuesday, January 13, 2009 10:51 AM CST

I�ve been trying to write an update, but hmm, somehow keep finding myself doing other things. Christmas was sweet and as low-key as it gets with so many young excited children. I�d love to post a host of pics soon (already uploaded on Facebook�look me up if we aren�t connected there yet!). It take a little more time/effort to got through the steps of putting them here, but this is the best family shot this year. :o)


Josiah is high maintenance, yet easily consolable *by mama* when he�s the center of my attention or strapped onto me. Si is already changing and growing so much though. Smiling comes much more frequent now, one even caught on camera:


And sleep is longer! He�s slept 6 hr stretches at night more often than not the past week. Ahhhh! This is a record for our kids, at a mere 7 weeks old. Maybe it�s because he�s so big. The boy eats, but also just packs on the weight. I stepped on the home scale with him and came up with 12 � lbs! No wonder my shoulder hurts.

My mom arrived Wed to be here to enjoy the baby and take in two fabulous �events� this weekend. The first is a family gathering including my Dad, brother and his family. Second, the Nancy Guthrie conference I�ve been anticipating for months. Consider yourself invited if geography and other logistics could possibly allow. Her solid and hope-filled theology is so good, yet deep and learned through the trenches. I just eat it up!

Here are the details:
First Presbyterian Church, Macon
Fri. the 16th 6-9 then dessert (registration beginning at 6)
Sat. the 17th 9-1
the speaker is Nancy Guthrie who wrote 'Holding on to Hope'
Her topics are:
Fri. 'When you world falls apart'
Sat. 'Questions we ask when life hurts' and
'Hearing God speak in your storm'
Call to register 746-3223 - $5.00

If you are coming, please do let me know so I can look for you! Josiah, my Mom and I will be there, God willing!

So much more to write, but not now�

I'll end this with a taste of Nancy Guthrie, a quote from Oct '06 Christianity Today...even if you don't "like" it, should make you think!

"...The fact is God cares more about our spiritual health than our physical health. Our bodies are going to die. Our souls are going to live forever. And God�s ability to protect our souls from eternal judgment and eternal death is more significant than his ability to protect our bodies from disease or death. Trapped in these bodies and in this time, it is hard for us to grasp. So in our prayer requests for safe travel and physical health, and in our more desperate prayers amid great difficulties, we try to apply to our bodies his promises of protection for our souls, and we�re left disappointed, accusing him of falling down on the job. But we will continue to be disappointed in him until our value system lines up with his, until we value the eternal..."

Hope to see you there!
Allison

Tuesday, December 23, 2008 3:29 PM CST

Caleb: tearful with disappointment that the song had ended �More James Brown.�

Allison: �Our girls are just so beautiful, I�m not eager for them to become teenagers.�
Jason, without skipping a beat or cracking a smile: �That�s when I�ll need a gun, to hold in my lap while sitting on the front porch.�

Caleb, in response to my dancing: �Mama you funny.�

Such a week of celebration and thanksgiving, for our spiritual blessings and our earthly ones!

The huge news in the Tripp household is that Amelia has finally developed the needed muscle control for big girl panties. Oh how exciting this is for all! I only had four in full-time (cloth) diapers for one month. Phew! Amelia, Moms, Josiah and I ventured out to the mall with top priority being to let the accomplished girl pick out new undergarments. I just can�t express how big this is at the age of 5 �. I mean she�s even initiating every trip to the restroom, which is something we weren�t sure she�d ever have enough sensation to do. Thank you God for this blessing!

While not as noteworthy, the details of Josiah�s test results revealed that he does carry the disorder. He inherited Jason�s defect, but not mine. He would have to find a wife who has mine before it would ever into play for his kids. No change in his health, as he will not be affected. It amazes me to know such detail about my son�s DNA though.

Alright, less technical, the little guy is already a month old. How can this be? And what can this one-month-old do? Lift that head like a champ! (You know you�re a special needs mom when this brings tears to your eyes. :o)



He�s also been doing a little social smiling already (not for the camera yet) and �talking� to mama:



Josiah�s such a mama�s boy so far, but no complaints here. He just is so good at cuddling and loves to sleep snuggled up! He has learned to nap in his cradle at times, but it�s also been fun to oblige him a bit. This, plus more naps on my part have both been possible due to the precious help that we�ve received. For the girls� first two weeks back to school, Jason�s mom came over each morning to get Lydia ready and out the door. Not only did this take off a significant aspect of the time responsibilities, but it also relieved me from lifting the suddenly heavy-feeling girl. Caleb had a steady stream of play-dates to allow me morning naps. Meals were wonderful too. I�m afraid I�ve gotten spoiled.

Sophie and Caleb have really paired off as playmates and Amelia stands strong as the best Mama/Daddy helper. In fact all the adult attention over Thanksgiving break seemed to do Amelia�s heart good. For the most part, school has seen behavior improvement from her since going back (although continued prayers appreciated!). Providentially the two times I did have to go up and intervene, were times when I had help and could go solo. Praying and working hard on tuning up self-control and first time obedience in all the kiddos over this break.

I have stayed mostly in social hibernation with Josiah (out only for occasional low-exposure errands�with less folks around who would love on him w/o washing hands first). Thankfully we�ve stayed quite well for �cold and flu� season, ever since the tummy bug finally played out. Jason�s been flexing his multi-tasking muscles with taking the other four to church. He�s such a good and capable Daddy! The newborn phase still isn�t his favorite. Fun games and jokes don�t soothe a wee nursling like the food source does. Jason told Josiah that he�s no longer lean enough to be a cucumber. He�s moved up to rutabaga status.

I do plan on my first post-baby church outing for Christmas Eve. Josiah will be tied on me for safe keeping. I�ve certainly missed church and it just wouldn�t feel like Christmas without a little bit of it! I�ve tried to scale down as much as possible this year, without trimming out the fun. The teachers were remembered but with non-baked goodies. Hopefully a few cookies will still come out of the kitchen, enough for the immediate family at least. If you�ve followed us for any length of time, you�ve figured out that I�m an ambitious sort, often not realizing what I�ve gotten myself into until I�m committed. It didn�t occur to me that Christmas would be challenging with a newborn, more importantly so little sleep on board. Now that it�s here, I�m going, oh yeah, we were still working on figuring out how to juggle the basics and this is a lot of extra stuff in the mix.

So I guess the basics will seem more manageable after this? If only laundry would stop building while Christmas shopping/wrapping/menu planning/etc. The girls decorated gingerbread houses at school already, so I don�t have to entertain any guilt for not doing this at home. Jason assured me that the gifts do NOT need bows. Pretty packages have been my trademark of past, but not this year! There is a time for everything.

This 2004 Christmas picture attempt gone very badly was resurrected today. This still makes me laugh and realize how smoothly most days really do go in comparison:



Even through moments like that, we indeed have so many blessings from above. Most obviously this year, we�re thanking God for babies, baby Jesus and (healthy) baby Josiah:


And thanks to Irene (www.perfectlyaffordablememories.com) for the fabulous pics. I have such talented friends!

A lady at the store yesterday gushed over Josiah and said she wished she had a baby for Christmas. In a since, we all do if we so choose, a baby Savior! He�s reason enough to celebrate year after year!

Merry Christmas!

Love,
Allison, my sweet hubby and FIVE kids

Thursday, December 4, 2008 3:20 PM CST

Results are in:

JOSIAH IS HEALTHY!!!



The following verses are true for all, created healthy or not. To God be the glory! Can�t help but read them today with Josiah on my mind and tears on my face.

~~~~~~~~~~~~~~~~
Psalms 139:13-16

For you created my inmost being; you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

My frame was not hidden from you when I was made in the secret place.

When I was woven together in the depths of the earth, your eyes saw my unformed body.

All the days ordained for me were written in your book before one of them came to be.
~~~~~~~~~~~~~~~~

Humbled and full of joy that Josiah�s days were not ordained to require daily medication and high seizure potential.

As a friend says, we�re singing the doxology around here!

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.

Allison

Saturday, November 29, 2008 4:31 PM CST

So here�s the short version with highlights, more like Jason�s perspective.

Josiah, a.k.a. �Si�, shares a middle name (Bradford) and full initials with his Daddy.

Josiah�s birth involved a large amount of �2s�:
2 hr labor on 11/20
Born at 2:22am
6# 15.2oz
20.5"
You can read about boy-king Josiah in the Bible at 2 Kings 22.

He also filled in a number-line for us, as we already had babies born at weeks 36, 37, and 39. He was 38 weeks 1 day. Sophie was a 41-weeker and I�m not inclined to shoot for that 40-weeker at the moment. :o) Maybe an adopted baby eventually!

Head about the size of a softball and overall, an overgrown cucumber.

Eyes barely opened the first week (maybe 10 min per day), so Jason accused me of actually birthing a puppy. Then again, instead of crying the first few days, Si squealed like a stuck pig.

All are adjusting well as we head into week two as a family of seven.

DNA results are expected early next week! It took 8 months for Caleb�s, since they hadn�t mapped our family�s specific genes prior.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And then here�s my long version that took longer to write than live. :o) You know, this is baby #5, so no baby book even hoped for. Must record somewhere if I want to remember someday!

Monday-Jason was sick that morning, and then I had it by evening. We were up together with our bowls all night.

Tuesday-IV fluids for me after midwife appt. I was 4cm and 70 percent. It was a gracious miracle that illness didn�t trigger labor.

Wednesday-We were better but still weak, Jason more so than me though. Midwife was so wise to send me for IV fluids to speed recovery! I had lots of non-painful contractions thorough out the day. Jason and I took Lydia on to her appt. with new eye surgeon and it went well. Really like the lady and she is willing to straighten Lydia�s eyes here in town, outpatient in collaboration with ENT who needs to remove an ill-migrated ear tube!

Wednesday night/Thursday wee morning hours-I went to bed about 11:30pm only to wake up at 12:25am with a contraction strong enough that I had to focus through it. Tried to sleep between this and the next two contractions, then got on up to consider a shower�fairly certain I was in labor. We went ahead and called grandparents (feeling a little silly as it had only JUST begun and could be a false alarm). Called midwife at 1:00am since I�d had 5 intense contractions in 30min and she said she�d meet me at the hospital directly. With the first three births, I labored for a while in the shower�but thankfully had the wisdom not to this time. Also, last two labors started with water breaking. Again, so thankful not this time, or we would never have made it to the hospital.

We pulled up to the hospital at 1:30am. Jason�s mom stayed at the house with sleeping kids. Jason�s dad was at home with the stomach bug. My parents followed us and parked our van so Jason could wheel me in. Contractions were much too intense for me to walk at this point.

My midwife, Jeri, suggested that the nurses take me on to a labor room rather than bothering with an assessment room. She really believed I would go quickly and she was right. I was afraid of getting hopes up as labor had still been happening for such a short time. I took my time between contractions getting dressed and into the bed. Jason turned on some calming Enya music. They monitored baby�s heart rate for two contractions then took off the straps. Jeri supported no IV (first time I�ve had this luxury in labor and oh so nice!). When she checked me, she calmly told everyone that I was 8cm with intact membranes. As soon as I felt ready to push, she was certain that water would break, I�d be at 10cm and baby would come out. She was right. In preparation, she helped me get on my side to prevent nausea (and it worked).

I had a hard time relaxing and realize in retrospect that I did no mental prep for this birth. As quick as it was, it would have probably have been my most painful regardless, but I�m sure this didn�t help. Even with the pushing, it was like I was just at my body�s mercy. I didn�t �do� anything. No one told me to push and I didn�t try to, but it didn�t take many little involuntary pushes before water broke. I am very quiet during labor but whispered such to Jason so he could let Jeri know as she was gloving up.

The lights stayed low and there was no bustling around. Jason asked if he needed to go get the nurses, who had all walked out, obviously not taking us very seriously with the predicted timeframe. Jeri said it didn�t matter to her, but she probably would stay in their better graces if she let them know. :o)

Jeri took one look and assured me that all I needed to do is raise my leg and this baby would come out. I didn�t have the strength, but they helped me and baby crowned with the first contraction and stayed there until next. Again, I just couldn�t bring myself to push voluntarily, and no one was �making� me. Next contraction and baby came out without even the slightest tearing. The dreaded �ring of fire� (head coming out) didn�t stand apart from the contractions this go around because the later were so strong. It was 2:22am, almost exactly 2 hrs from first note-worthy contraction and 1 hr from arriving at the hospital.

Josiah was placed on my chest.

I was so relieved and thankful for this little guy�s presence and that it was over. I don�t love the first pics of me with baby as there is no smile, no evidence of the amazing joy.

It was clouded as I was still worried about birthing the placenta. I actually had to be talked through that as I just didn�t want the pain of pushing. I was a bit traumatized from the physical experience, although so glad it was short and as I wished. With Josiah waiting until 34 weeks to turn head down, for the first time I considered that c-section was a possibility�one that I really didn�t want. The midwife certainly knew what I was hoping for. I never got around to even getting out my birth plan until after birth and didn�t miss it.
Jeri was such a wonderful support!


My mom cut the cord and Josiah cuddled with me for over an hour. He wouldn�t nurse, which foreshadowed breastfeeding issues for the first week. A friend took one look at his picture on the webpage and said �They certainly didn't get that baby mixed up at the hospital! He looks just like the others.�
Amelia on left and Josiah right:


Jason woke the kids up later that morning with pictures of Josiah, making them guess who it was. Boy did they pop out of bed with record morning eagerness. The girls went on to school with their own pictures in hand and fixed grins on their faces. I hear that Caleb was the giddiest of them all; continuously pouncing on Jason and making sure Daddy wouldn�t slip away without including him in the next trip to the hospital.

Caleb was instantly so sweet and nurturing to his brother:


Me and my men!


Everyone came up after school:


The girls� first question was �Why doesn�t he have arms?� Josiah was sporting his new swaddling gear, a wombie, and loving it!






We even got to show off the crew to Leigh, a friend of the family who helped me extensively in her role as lactation consultant when I was pumping for Lydia then later nursing Sophie with a supplementer:


I am enjoying all of his teeny fluffy diapers. This is my first newborn in cloth and I�m having such fun with it!


Our pediatrician, Dr.Logan, gave Josiah a good initial report: healthy baby boy.

Jason told him we were beyond ready for discharge and Dr.Logan asked if the nurses had followed his orders to disturb us hourly. Jason assured him that the hour of 2am involved 3 such disturbances alone. :o)

We came home Friday afternoon, delayed only due to failed attempt at getting blood drawn for B6 test, which was taken care of Monday. The kids have adjusted great. In fact, one might ask, what adjustment? It�s as if Si�s always been around. No jealousy has been seen, rather loving interest from all but none too overwhelming. I couldn�t have asked for better/easier!

Our biggest challenge was nursing that first week. Josiah was zonked out for at least 12 hours after each �trauma�-birth, circumcision, blood draw. Then when he did wake up enough to nurse, he fought it, meaning sometimes an hour of working with him crying to get 20 min of actual nursing.

Second biggest challenge was my sensitivity to noise/activity. Between hormones and the stress of baby not eating, rather crying�it was just a lot. I spent a good bit of time back in my room with just Josiah. My parents helped with the kids for the week and planned a big Thanksgiving meal.

My grandmother was able to come over Wed and Thurs, as tummy bug finally seemed to have passed through (getting my dad last�Friday as we were coming home from the hospital!).



My parents returned home yesterday, while the tummy bug hit Jason AGAIN. I managed with all the kids though and it was nice to have a low-key day. All seven of us napped at the same time! What a gracious blessing! Then last night I got more sleep than I have in at least a week if not longer.

I am enjoying this little boy SO much. Looking back, long-lasting nursing issues really did make newborn life more stressful with Lydia and Amelia. They tired so quickly due to their low muscle tone. Poor Sophie just got a worn out mama working through first trimester fatigue. These boys are showing me how much fun the newborn phase can be�especially now that Josiah is eating well. Even during that first week though, it wasn�t muscle tone stuff, for which I was thankful. Si has great tone. This is my best indicator thus far pointing to health. He is taking B6 until test results come in, just in case, but I expect to be able to stop it next week! How awesome would that be! Regardless, this boy is thriving and strong.

Blessed beyond belief!
Allison

Thursday, November 20, 2008 1:45 PM CST

*Added 11/22/08
Birth story not typed out yet, but here's a picture of sweet Josiah:



~~~~~~~~~~~~~~~~~
He's here and so perfectly created!

Josiah Bradford Tripp
2:22am (after 2 hrs of labor)
6# 15oz
20.5"

So Thankful!
One Very Blessed Mama

Tuesday, November 18, 2008 5:04 PM CST

GI bug has hit hard! My parents make eight of us and five have come down with it in the past 24hrs. I spent the afternoon getting IV fluids and Zofran. I was glad I went on, as baby�s heart rate was pretty high until fluids got going.

Tired and weak, but feeling much better (and keeping food/drink down). Talk about gaining some perspective. I�m eager for baby to stay IN now�until we all get well. Don�t want a newborn getting this stuff!

The midwife couldn�t believe last night�s events didn�t put me into labor, but we are all very thankful. I lost two pounds in one night!?!? Yet, it has hit Amelia the hardest. I�m also very thankful that the injectible B6 that I�ve fought insurance over for a year finally was approved and delivered last week! Talk about perfect timing! She�ll probably need it tonight since she�s not been able to keep it down today.

Jason�s mom graciously took the two kids with still boundless energy away to her house for a while and will be back to help with bedtime. Such provisions!

Thanks for your continued prayers!

Allison

Friday, November 14, 2008 9:14 AM CST

So will baby come this week? Next? Later? I�m ready. Lots of BH contractions but still waiting for body to kick into high gear. As of yesterday, I�d gained a (measly) 1 cm�making it 3cm, 70%, yet very low. Could she have really said positive 3 station? The midwife could feel his head easily b/c it was so low, but he pulled back up when touched. :o) Come on little one. I�m not that uncomfortable, unless my legs need to move significantly against gravity. My hips are soooo loose in preparation for this birth. I have to use both arms to pick up the lagging hip when trying to roll over in bed. Hoping this means another quick delivery!

My parents couldn�t stand it any longer and will be traveling our way today. They�ll be here for a week before taking Sophie and Amelia to Florida for Thanksgiving break. I do hope that the girls get to meet their new brother before their adventure.

Amelia had a fabulous day at school yesterday, after a long string of very poor responses to her authorities there. Hoping some more focused grandparent time will help a bit. More tightly enforced bedtime is working to her benefit as well. She�s off to horseback therapy today. Praying for a second good report despite the early morning! She was so proud yesterday.

Lydia�s a happy girl again since antibiotics for an ear infection. It was frustrating to say the least to see her slipping into grumpiness again. So glad the cause was identifiable and fixable!

Sophie turned six on Nov 1st! She still loves school and comes home with more energy than the rest of the household put together. My end of pregnancy fatigue makes it tough to manage, but thankfully Jason gets home shortly after they do and has been taking the younger three outside to play soccer. We have an elementary school field across the street from our house with affords lots of space to move. Sophie was pleased to have easily outrun a neighborhood boy there and hear his peers tease to such end. The girl is just fast! Oh and soccer is done. We�re bailing out of Wed night church for now too. Just the bare minimum!

Caleb is such a funny mix of the two girls plus some pure boy mixed in. He keeps up with Sophie�s activity level when she�s home, but is also observant like Amelia.

Amelia: Mama, you hold your pinky finger out from the steering wheel when you drive, just like Grandmommy does. (Huh, I do what?)

As Caleb helps me put clothes into the dryer, he identifies who wore that shirt last. He can spot a Waffle House or a PT Cruiser from further off than I can see too! :o) He has a small collection of the later that he carries around, �Grandmommy cars�. I found Jason and Caleb laying in the floor recently, with a fleet of hotwheels Corvettes lined up by vintage in front of them. Jason was pointing as Caleb identified �convertible� or �hardtop�.

I know when the baby comes, Caleb will suddenly seem all grown up. It�s already happening, since he�s talking so much and letting us see what�s going on in that head! That plus he�s even sleeping full-time now in the big boy bed. He can eagerly climb in and stays put after only minimal training. So thankful!

Jason and I have plans to squeeze in as many dates as possible in the next few days. And naps, I�m planning a good long nap today as the rain beats down on the roof!

With peaceful anticipation,
Allison

Tuesday, November 4, 2008 8:10 PM CST

So much random fun stuff to share, but I want to hang out with my hubby instead tonight. I must report though that one of the many highlights of my Birthday today was news that baby is starting to make his way here.

I am almost identically progressed as I was with Caleb at this point: 36 weeks, 2cm and 70 Caleb hung on for another week and a half from here...so we're expecting baby roughly within the next two weeks! So exciting! And on top of that, the political ads and phone calls will stop. :o)

Off to watch election news and fold clothes next to my man. For a couple that does not enjoy politics, it's humorous that election is on my Birthday this year and inauguration is on his.

I guess I need to pack a bag!
Allison

Tuesday, October 21, 2008 5:14 PM CDT

More great news! Can you stand it?

Moms is graduating from rehab on Friday and returning to her self-declared "home" back in assisted living. She is so eager and excited! She's walking again with her walker, something the neuro predicted wouldn't happen. Hopefully she'll be even steadier than before once her new walker, designed specifically for Parkinson's patients, arrives this week.

Baby is head down too! Checked with u/s today at OB appt, to determine whether or not we needed to schedule turning next visit. He measured approx 5#2oz too, nice for a 34 weeker. (Oh and *I* didn't gain any weight these past two weeks, which makes me feel even better about the recent jump. :o) He's still measuring just right though.)

Thanks for the powerful prayers! To Him be the glory.

Celebrating,
Allison

Wednesday, October 15, 2008 7:10 PM CDT

Life Goes On-A few more bumps and loads of fun!

Lydia is much happier than she�s been in a long time! This round of tummy med must have been just what she needed. Thank you God, for the veiled blessing of a hospitalization.

Sophie and Amelia have taken turns having 24-hr-ish fever/vomiting illnesses. I just can�t get over how a top-bunk sickness can cover everything on the bottom bunk too!?!? Other than the gross extra laundry, these illnesses weren't a big deal other than difficulty keeping Amelia's B6 down. Gotta get my "emergency meds" stash caught up (some expired stuff in there that insurance is fighting paying for).

Soccer has continued. Amelia even took off from the pack, running the ball to the goal once! She was so proud and so disappointed that Sophie (yes, her teammate) stole the ball just before she would have scored.

Amelia hanging out in her own world while Sophie�s in the middle of things.


Amelia�s running is usually saved for water breaks. :o)


Sophie is so speedy out there, but struggles to direct the ball while flying down the field. This time it all worked out beautifully! Can�t wait to see what a little more age/maturity will add to this gal�s game.


The pumpkin patch is open!






And Caleb. The boy has been playing dress-up with his sisters, so ready for a brother to come along!


Both my boys caught up like crazy this week. Caleb is having a speech explosion. He�s been �developmentally fine� but a little man of few words until just recently. Context clues are still helpful to decipher the conversation, but he�s chatting like crazy and repeating everything!

Other boy (nameless, poor guy) caught up too. While still breech, he and I gained a whopping 6.5 lbs the past two weeks, which brought my tummy up to measuring just right. That�s 5 weeks worth of catch-up in two weeks!



I feel and obviously look bigger, as I�m starting to get comments. Like the concerned question from the sales lady �You aren�t going into labor or you?� when I find a seat in the store.

Moms has also been making tremendous progress. What a difference a couple weeks has made for her! She is wheeling herself all around at the new facility and even walking for good stretches in the walker!

First week in the hospital (not her low):


Last week:


My mom has gotten some rest since that picture too, especially Monday while we were out of town. Jason�s parents plus our immediate family went to the GA Aquarium for Lydia�s belated Birthday present. How fun and exhausting! I am working on those pictures and hope to share them in the next entry.

Tomorrow the youngest three go to the dentist in the morning. Lydia sees the eye surgeon in the afternoon. I am glad to get these things checked off, as I'm starting to feel the need to wrap up whatever I can before baby. Getting down winter clothes and baby stuff down is next.

My mom will be staying through next week to help with these projects, spend more time with her mom, and to baby sit overnight for an exciting outing. Next week, Jason and I will be attending an out-of-town banquet. The Rosalynn Carter Institute for Caregiving has chosen me as Georgia Family Caregiver of the Year. I didn�t even know this existed or that I�d been nominated. Jason and I will have mileage and hotel paid for as we go for the evening, during which I�ll receive $1000 and a gilded rose from the former first lady. Kinda fun, huh? I figure this will be the last overnight-childless outing for a while. What nice timing!

I�m hoping for some good sleep tonight. Still catching up from our recent adventures, but who am I kidding, I'm 33 weeks pregnant!

So Blessed,
Allison

Thursday, October 9, 2008 12:49 AM CDT

What a difference 2 weeks makes! I just got back from my OB appt (totally forgot Tues!). No one likes to hear that they've gained 6 1/2 lbs in 2 weeks, but apparently that's just what we needed. I'm still well within reason and baby/belly is now measuring properly! The dr asked if I recently felt significantly bigger. Oh yes.

Another blessing of the day is that Lydia is tolerating 1/2 strength formula great. I plan on trying full-strength tomorrow. Her gut-cleansing med is a 10-day course, so we have a ways to go there, but otherwise looks like we're almost back to "normal".

Moms had her best day in a long time yesterday. She was able to wheel herself down the hall and to/from the bathroom. She's also starting to help with her transfers. Both her voice and her appetite were stronger too! This gives much hope and encouragement on top of the blessing of having a new room/roommate.

Prayer requests: continued progress for Moms. Complete clean-out and tolerating formula for Lydia. Health for my mother-in-law (I'm sure staying up with Lydia at the hosptial didn't help her immune system fight off the flu!). Rest for Jason, myself and my mom. Peaceful fun time off for the kids (no school tomorrow or Monday).

I am scheduled to have my root canal refilled tomorrow, then will need to schedule a filling to go on top. The schedule just doesn't seem to clear, but it's all much easier to handle when sleeping in my own bed! Earlier this week Sophie asked Jason if he slept well. He told her that is just isn't the same when Mama's not in the bed. :o) Thank you Lord for home! We were ALL in our own beds by 8:00 last night!

Tired but blessed,
Allison

Wednesday, October 8, 2008 12:29 AM CDT

We are HOME! Thrilled, but too tired to write more right now.

Allison

Monday, October 6, 2008 8:09 PM CDT

**Tuesday update: One big dirty diaper last night!!! Thank you for poop prayers. Keep them coming. Lydia is tolerating slow pedialyte feeds so far today and I just got off the phone w/ the hospital pharmacist regarding the med that cleans Lydia out the best. Ped was willing to write it, but hasn't b/f, GI is out of town...and this isn't a common med regime of course. Thank you God for a friend in the pharmacy! Typical Lydia situation.

Another plus of the day is that the local neuro came by for a consult. I've been meaning to talk to him about Lydia's irritability, just not sure I'm physically up to a Savannah trip right now. He's going to get an EEG done while she's inpatient, just to see if it could shed any light on things. Glad to make the most of our time. He walked into the room actually just as I called to check in on how the night had gone. Perfect timing so I could talk things through with him.

My MIL said she was fine to stay a while longer, so I stretched out for a little nap. 2 1/2 hours later I rolled over! Off to find lunch and head up to relieve her, SO thankful for a bit more sleep.**

Yesterday morning Lydia looked pale and lethargic. By evening it was apparent that she was impacted and dehydrated. (Rectal tube wouldn�t go in and this blockage down low stopped the flow from above...whole day's worth of clear liquids sitting in her tummy!). This also meant that she wouldn't be able to absorb B6 by stomach, so off we went.

She was admitted to the hospital and got fluids overnight, which really perked her up. B6 by IV was also given, so we could keep Lydia's five year seziure-free streak going. Not much progress poop-wise so far other than x-ray to positively identify the issue. Attempts at more pedialyte by tube today were unsuccessful. After waiting most of the day for the GI to come by and disimpact her, we learned that he is out of town for the week. Hopefully tomorrow we can scrounge up the peds surgeon to do the job.

While I did sleep last night and even got a nap today, I am so glad to get back to my bed tonight. Jason's mom is staying with Lydia to give me a break. (Thank you, Beth!!!) This medical "bump" is certainly not a big deal. It�s actually been a long time since we�ve needed such intervention for Lydia. Still, I�m just tired and praying for quick resolution so we can start back to finding our rhythm at home.

Caleb's also been running a fever the past three days. It isn't slowing him down much, but may keep my pace a bit slower even after Lydia gets home if it persists.

My sweet husband got the girls off to school and took Caleb duty today. They had some fun, rare one-on-one time and even folded the MOUNTAIN of clean clothes I'd left behind.

I've had a chance to catch up with some dear friends (staff) at the hospital too. Go figure!

Thank God for the provisions and you for the prayers,

Allison

Friday, October 3, 2008 7:46 PM CDT

Just like the ticker says, baby is almost 4 lbs (3# 13 oz, give or take 11oz!?!?). Detailed ultrasound measurements and 30 min of heart rate monitoring showed a perfectly healthy baby. The doctor (infamous for his bedside manner) was down right pleasant and intrigued to have a patient with a genetic condition completely unknown to him. He was eager for the articles and DNA information that I brought and does not see any need for further high-risk visits.

Moms transferred to inpatient rehab yesterday. The daily therapies certainly provide her with the best chance of regaining skills needed to return to assisted living. While the facility is the nicest of its kind in town (so I�m told), it�s also a nursing home with lots of folks lining the halls that are failing mentally and physically. Caleb wasn�t fazed by it all today, but I�m sure the girls will have lots of questions!

Lydia has appointments with the local eye surgeon and her ENT next week. I�m hoping to coordinate surgeries to be under the same anesthesia by these two guys�before the baby is here. Please pray for logistics. I�m also due for refilling of a root canal. Again, maybe this medical weirdness is a family thing. I had a tooth start hurting horribly 15 months after a root canal. Makes no sense at all to me, but they cleared it out, shot in antibiotics and a temporary filling and the pain is now gone. I�d gladly spend my time and money on something else, but this is one of those times I don�t have to ponder�it must be done.

So many appointments and so much laundry! :o)

May God be glorified in it all!
Allison

Monday, September 29, 2008 8:28 AM CDT

**As of this morning, Tues, Moms has woken up and is as clear as can be. She and Lydia are cut from the same cloth, mysterious and strong! Thank you for your continued prayers.**

I am eager to share the overdue pictures from August, but an update first. Since last week was a full one.

Tuesday, Moms' neuro had me take her to the hospital for admission, to get to the bottom of her leg pain. What seemed somewhat simple has been quite the can of worms! Whether it's medication related, different environment, something else, or combo of all the above...she is almost unrecognizable as the same person now a week later. So thankful that the doctors that know her baseline are back on today, because this weekend was more than frustrating. The GP assured my mom that the confusion, hallucinations, fear and significant loss of motor function were a "normal part of grieving for a widow". Um, not normal here. My Mom took the first flight that afternoon when I called for help Thurs. This was when the hallucinations started and we obviously weren't getting a quick resolution to the issues. It has gotten worse daily, to the point of her refusing to take meds today. We covet your prayers for answers, if they are to be, peace for my grandmother, and health/stamina for the supporting family. Seeing her afraid and unable to be comforted is the hardest part.

After I got her settled in the hospital (record speed I might add...God was gracious!), I walked up the street to my OB appt and u/s. The results were fuzzy. I'm still measuring about a month small, baby measured in the 35thnd fluid was minimally normal. While not all babies can be above average, mine have been good sized thus far...the smallest being Amelia-6#14oz at 36 weeks. Add all that up and top it with our genetic condition (which doesn't make for small babies, but kinda freaks out the OB) and they want me to see the high-risk OB. I have an appt Thurs afternoon, which I don't expect to be eventful. Oh and baby was high and breech, meaning another u/s at 34 weeks to confirm position and schedule turning if still needed.

Beyond that, Lydia is about the same, but we have a very promising interview this afternoon for caregiver. Appts next week may determine if we start new tests (which I wouldn't EXPECT to be helpful) or just manage the fussiness.

Sophie's fear isn't going away, but Amelia was easier to manipulate into cooperation for horse therapy. No, that isn't my first choice, but a trip to the prize box if she did her best, worked wonders last week!

Caleb is very clingy. He's been well cared for and had loads of fun since Moms has been in the hospital. It's not our norm though, time home w/ just me. Today that's exactly what we have planned, along with naps, laundry and maybe making banana bread.

Alright, now to the BEST part. Some pics!!! So many fabulous ones to choose from. I don't have the energy today to piece a bunch together, but will put a few in the photo album too. Remember, Lydia was not with us on this trip/photo shoot, but I'm so thankful for her beautiful Birthday pic at the top and will include one of her from the swimming party in Aug...so she isn't left out.









Not sure how many pics y'all really want to see of my kids, but I do plan on sharing more later. There were just SO many good ones! Thanks again Addie!!!!

Love,
Allison

(Check photo album and Addie's web page too. My nephew Joshua is on there, as well as more pics of the kids from the shoot. http://www.talleyimages.blogspot.com/)

Wednesday, September 17, 2008 6:36 PM EST

Can you really be eight years old beautiful baby girl?

Happy Birthday Lydia-Boo!

Love,
Your Proud Mama

Friday, September 12, 2008 8:48 PM CDT

We have a new form of BUSY hovering over the house. Jason and I made the decision to commit to some things and live-it-up family-style this fall, then pull back and hibernate w/ baby in the winter. What were we thinking? :o)

Soccer has started, for both girls this time; practice one night a week and game every Sat. Sophie is so focused and shows much promise. Amelia is tiring and loosing interest easily. Live and learn. Caleb loves the time outdoors and on the playground by the fields. Lydia is grumpy here or there, so she might as well get some fresh air. The practice time has turned out to be late and due to conflicts, we�ve had to take turns heading out solo w/ four.

We seemed so close to staffing Lydia�s support staff, and I was planning on bringing them with us to stay up in the shade with her. Hasn�t happened yet (please keep praying for this!). God provided family friend at the top of the hill for practice time though. Lydia sat with my dad�s secretary from almost 20 yrs ago while I purchased uniforms and tried to keep Caleb out of the middle of practice. Then Granddaddy showed up to entertain Caleb and it looked like I just had my ducks all in a row and planned out. Aren�t God�s provisions always the best?

Other than soccer, Bible study has started back for me on Wed mornings and church choir/classes for the kids Wed nights. Little homework assignments for school are a new thing in the house and weekly show and tell. I already forgot to plan for show and tell the second week, but thankfully Sophie had an extraneous pair of sunglasses in her bag that suited her fine. Horseback therapy is on Friday mornings BEFORE school. Oh how I�m not a morning gal even when I'm not pg. Jason�s mom is graciously taking the 7:00 session with Amelia and I meet them there with the rest so two can head on to school while Caleb and I wait for Lydia. Caleb and I are then shooting for lunch at Moms� place. He has become quite the doted-on mascot out there!

Well, that should establish busy. I�m sure I left out plenty (like appointments, mainly for Moms and myself these days rather than the kids).

So how are we, other than busy?

Lydia is fussy. I mentioned last time how it makes me reconsider our plan of action when she gets like this. After more observation, I really do not see a correlation with the fussiness and a distended tummy, which would convince us to go ahead with ileostomy surgery. She actually keeps a tiny tummy much of the time now, for maybe the first time ever!

Sadly the irritability doesn�t obviously correlate with anything. Urine is clear, a finger has been swollen for weeks, but x-ray was fine and it doesn�t seem tender. She had a horrible day at school yesterday, great today and mad again by tonight. We haven�t changed anything! Her school nurse hates the idea of a chill pill at school w/o an identified root cause, but illusive root causes are Lydia�s way, always have been! We�ve had no choice when out as a family, but to give something to take the edge off. She just cannot scream through our meal at a restaurant and we go as a family until other supports are in place. The pricey beanbag at home is a saving grace. God knew how much we�d need that thing long before we did!

She does have good days, but we can�t figure out how to foster those. Oh and the horse, can we bring the horse home and to school? NO fussing there, unless it stops of course. :o) It�s amazing how the out-of-control crier will calm down and really work on head/trunk control etc on that horse. There has never been another form of therapy for which the girl has more consistently cooperated.

Amelia on the other hand isn�t cooperating lately. She�s learning how to steer the horse and it�s challenging, so she gives up, looses interest and tunes out from the therapist. This child can be as rebellious and stubborn one day as she can be helpful and rewarding the next day. We�ve had a lot of the former the past few weeks. We�ve entered a new stage of parenting. For so many years it was mostly physical (and medical). Now the spiritual/mental work is really kicking into full gear. For Amelia, one parent/teacher conference and lots of focus/special cuddle time/prayers and discipline have brought some progress at home and school. The behavior has shifted to therapy now though.

Sophie�s new parenting challenge is fear, specifically fear that she�ll break out into stripes if she�s in a room by herself for even a moment. Any warm body satiates this fear, even sedated Lydia. Absence of such melts her into a puddle of sobs. While we�re trying to work through this with her during less pressed times, I�m thankful Sophie has two willing siblings to accompany her while we are trying to get out the door. I have become dependent upon her ability to go to the potty, gather stuff�without me! I�m assured that most kids have phases like this and they do pass. The overlap with Amelia�s challenging weeks definitely has been humbling and reminds us of our desperate need for the wisdom and intervention of these kids� Creator, even with the more �typical� issues.

All three girls are really enjoying school. Even Lydia has saved most of the severe fussing for home.

Amelia was helper today and got to dictate the �class news� and bring home the writings. It included announcement of her new baby brother�s name, which we still aren�t unified over. :o) Of course I couldn�t help but smile since she announced my choice. Silly girl.

Sophie is a sponge for academics. It�s just amazing how much she�s picked up already. Her new favorite pastime is identifying the first letter of each word that is spoken in her presence. She enjoys handwriting too, copying anything she can onto paper. Even though she gets to play soccer tomorrow, she�s sad that it isn�t a school day.

Sophie�s also very drawn to peers, already having pegged a best friend at school, chosen because she�s a girl that wears skirts and jumpers, and her name starts with an �S� like Sophie. Sayward has joined us both times I�ve gone up to eat lunch with the girls. We get to eat in the art room, since the lunchroom is a no talking zone. Amelia brings a classmate too, but is quick to explain that they aren�t friends really; they just asked her if they could eat with her parents too. She has a running list of who�s requested to be next.

Still, I found it much fun that Amelia�s �friend� last time was also the great-granddaughter of one of the sweeter ladies that eats at Moms� table in the assisted living facility! Pretty cool, huh? That meal was accompanied by lots of family, as my parents, brother and his crew all came to Macon for a visit.

I was glad to see Caleb enjoying his baby cousin. The first intro, back in July, provoked much jealousy. This time, as he awaited their arrival each morning, Caleb would chant �me more baby�. He loved �Ja Ja� as he calls Joshua. I�m of course projecting to our next addition, hoping for a similar response.

Baby is cooking along. I cannot believe I�m to the point of every two week OB visits! I will have a 30wk u/s a week from Tues to check the little guy out. My abdomen isn�t measuring as big as it should and the theory is that he is still sideways, rather than head down. They want to make sure growth and amniotic fluid are appropriate though. I certainly still have plenty of time, but praying that he will work his way head down before delivery! I think he has been there occasionally, but still just flipping around in there.

Jason is such a funny man. Sitting at dinner tonight I was just reminded of what drew me to this guy. His dry humor, for which you must be paying attention to catch, just keeps me smiling. Even when the busy days get long and exhausting, he�s just fun to be around. Thank you God for such a sweet blessing! Jason is tired. We both are. The pace is more than either expected. He was asked today if he was interested in adding another class to his teaching schedule (for a wee bit more pay). His response was that his poor wife barely got to hang out with him as it is. True. We�re dropping into the bed when the work is done, or at least close enough to done.

It�s a sweet time though, watching the kids change and become even more intriguing and fun to interact with. Our cups runneth over!

I�ve used up lots of words tonight. I�ll start working on a picture entry for the next entry. Boy do I have some fabulous ones to share (thanks Addie!). Oh and little Lydia turns eight on the 17th. Can you believe it?

Off to join my guy in the bed, before 10:00 on a Friday night and loving it! :o)

Blessed,
Allison

Sunday, August 10, 2008 10:35 PM CDT

S: Does God love children? Will He play with us in heaven?
A: But He doesn�t have a body!?!?
S: I�ll draw nicely for Him.
A: I bet He�ll have a big stuffed dog.

S: Why does someone go to heaven?
A: Because they are old.
S: They repent!

A: What�s after high school?
Mama: College perhaps and that may include moving away to your own place.
A: Will I take my things with me?
Mama: Some of them.
A: I want to take my stuffed dog.

Stuffed dog recently underwent a name change to �Willy�, because he�s brown like the Willy Jason taught last year. Dog used to be �No one� and stuffed cat is still �Normal�. So we�d spend a portion of our nights locating No one and Normal before bedtime. :o)

Now, more summer pics.

First �fruits� of the garden and one of our summer staples-buttered pasta w/ fresh tomatoes and basil from the garden topped with cheese�yum! We also have some watermelon growing, a few cantaloupe and peppers, cucumbers and all sizes of tomatoes now.





Caleb�s first haircut:




Lydia swimming:






And the other three in the pool with Nana and Bapa:




Uncle Jeffrey (my brother) came through for a few hours one night as he had to fly a plane out of nearby Airforce base in Warner Robbins back to NM. What a fun and unexpected blessing:






Sophie and Amelia are as excited for Monday (school) to come as they used to be for Saturdays (Daddy home). Both have braids and beads in their hair to sport tomorrow too. Amelia�s response to her looped pony tails the first day was �Mama, my teachers won�t believe this hairstyle.� I did think it was cute but the drama that comes out of this child! She decided to save her jolly rancher from church today unlike her sister who was sucking away on hers. Amelia told me she was having better stewardship of her candy. I assured her that she could eat it, candy not being something that really needed to be saved for future resources. Jason decided today that his daughters are more like cats and son like a dog, Caleb still being at the puppy stage. The girls are so much more complicated, pensive and unpredictable (moody) while Caleb just checks in often, plays hard and rolls with it.

Jason and I had a time of worship and prayer with couples from our Sunday school class tonight and I was just really impressed with the (obvious) need to continually pray for our wisdom as Lydia�s parents. Medically speaking, we get a lot of affirmation on how informed we stay and how her care is managed. Lydia is such a mystery though to all and only God�s wisdom can mercifully guide us regarding future decisions, big and small. Just when I think she�s sailing, she has really fussy days that raise big questions.

Amelia was asking about death again today (they�ve been to more family funerals in their short five years than I did in decades). She wanted reaffirmation that God usually chooses to for people to die after they get �old�. Then we talked about baby Micah and how God had a different plan for him. I shared how sick Lydia used to be and how it didn�t look like she would live very long into childhood but God wasn�t ready for her to die. Why? My best answer was that God knows what will bring Him the most glory. How He is glorified in Lydia�s pain is a mystery to us and if part of our role is helping relieve that, we want to be sensitive despite what that requires of us regarding care. So, please continue to pray for wisdom regarding direction and timing. Today she was the picture of contentment, yet still LOTS of air came out with the tube at bedtime. Maybe she�s just a moody cat too, unpredictable at best! :o)

One Blessed Mama,
Allison

Thursday, August 7, 2008 12:54 AM CDT

I still want to share more summer pics, but today�s first! The Tripp girls all started school and even rode the bus. I was ready to take them, expecting it to run late, but they were thrilled when it pulled up as we were loading. Well, Sophie and Amelia were thrilled. Caleb spent the next half hour crying �me, bus�. Caleb and I went on up to the school to deliver some of Lydia�s stuff and he was pacified by playing with the toy bus in Lydia�s classroom. She was the only one in her class today, expecting to be joined by 2-3 more girls by next week.







And a couple more for fun, notice Sophie's missing tooth on the top:




Blessed,
Allison

Saturday, July 12, 2008 9:37 AM CDT

This first set of pictures is from our May birthdays.

Caleb�s was simple. It doesn�t take much to impress a two-yr-old!




Amelia packed a much busier day. First we were off to horse therapy.

Don�t know which was more fun, riding:




Or playing during Lydia�s turn:




Caleb just ate it all up.


Aside from one minor upset over dirty hands. :o)


I thought this cartoon effect was a cool new option in photobucket, blowing out candles:


That was actually the third blowing-out-of-the-candles. First was at school, then at Amelia�s favorite Japanese restaurant. (Moms even tried her first sushi!) Fun for all!













Fun times!
Allison

Friday, July 4, 2008 9:00 AM CDT

Amelia: �Mama, do pirates like to wear earrings? That man ordering his food has an earring.�

Sophie: �When I grow up and become a mommy, I want to have a red corvette and a big silver van (12 passenger).�

Caleb, first three word sentence: �Me mo dider." (Me more sisters.)

We have settled down at the Tripp house. Jason said �NO� to the garage sale. He�s ready to have me back. Jason is even off for all but three days in July!!! Ahhh, summer is really here.

So, to catch up:
Lydia�s conclusion from NC is that ileostomy (the more invasive surgery, poop into a bag) is the only intervention being recommended. The last test planned is local, to rule out a rare hole between her esophogus and trachea, to explain the massive volume of air that accumulates in her tummy. Dr.F assured us that we are doing a good job with the current treatment approach though, so the surgery is not urgent�just there when we are ready. This is something we can get done in Savannah too, so no more out-of-state medical trips planned.

While in Savannah, Lydia and Amelia were established w/ a new urologist. Dr.Mazo was great, not unlike all Lydia�s other specialists in the area. He wants us to stop the nightly catheterizations and gave us an easy to execute home plan for when we suspect bladder infections. I was worried about not cathing, yet continuing overnight feeds at 2 oz an hour. I just knew this was going to mean fussy girl during the night due to wet sheets� So far so good! She is seriously diapered (cloth) with stay dry layers by her skin and on her bed�so she �feels� dry despite the fact that everything on and under her is soaked in the morning. So, it�s laundry instead of medical procedure, but she�s actually waking more content. Maybe that catheter was bothering her.

After an ultrasound of Amelia�s bladder and kidneys, Dr.M said not to worry about Amelia for now, give it more time and assume it�s all physical inability (rather than behavior). It was nice to have that direction, for my sake and to pass on to school, as she required three complete pant/pull-up changes in the hour and a half around the appt, despite four trips to the potty!

The second Savannah stop was the eye doctor. Both girls made notable progress due to patching since Dec. So much so, that Amelia�s now to patch the opposite eye. Lydia is to the point where eye straightening surgery is recommended for vision as well as aesthetics. Since she�s seeing better out of her weaker eye, the �double vision� from her eyes not looking in the same direction must be bothersome. She spends a lot of time with one eye buried in her headrest. Dr.Adams explains this as trying to help herself not see double. It makes sense. Dr.A is not longer doing straightening surgeries, so we will work on getting this done in Macon soon. I hope to coordinate with the ENT to remove the ill-migrated ear tube removed at the same time.

Lydia is doing well at day camp and is even stepping it up in recreational activities. Her new pool float came in (funded by Medicaid) and she LOVES it. I�ve never seen her content in the pool for a full hour before (the whole time she was in the water!). I know this looks awful, restrictive to have something around the neck, but it�s one of the only flotation devices that doesn�t require trunk control. Lydia could kick, wiggle, roll to her back, side, tummy. It was awesome! The second device (a wedge) has arrived since and we are eager to give it a test run as well.

Sophie and Amelia had a rough start to the summer, lots of fighting. Like every new stage/development in parenting, it felt like this would last forever. It didn�t though. Thank the Lord that through prayer, very active parenting, and a little space the girls have returned to being best friends again. The later came during my grandmother�s time at the hospital and here. The girls were split up for playdates during the first week and had VBS the second.

Caleb is their mascot, following and imitating everything they do. While we love this we are also thrilled that it won�t be long until he has another boy to pal around with too. That�s right, baby #5 is a BOY! You can start praying for the name choosing process. :o) It�s �good� when I share a name w/ Jason his face doesn�t contort and vise versa!

Other than overdoing it the past couple weeks, this has been by far the easiest pregnancy yet. I really expected the opposite. I have come to believe that resting makes far more difference than what number of pregnancy it is. Having the girls in school during my whole first trimester meant for many more naps on my part this time. Also, I am not spending my days w/ a baby on hip, which has been much easier on my body. I�m really so pleasantly surprised and thankful for this blessing! The dizziness usually sets in b/f I even confirm pregnancy, but only started last Wed (17 weeks) this time. Amazing, and hopeful that maybe, just maybe, resting back up will return me to that fabulous dizzy-less state. I still don�t have the usual aches and pains though. Instead I got to experience very early movement, 13/14 weeks! Jason has even felt it already, which is a good month earlier than with Lydia. Fun stuff!

Back to Caleb, wee man is already interested in and quite good at using the potty. Dare I dream that he will indeed be trained b/f the next diapered one arrives? He gets upset if not �allowed� to potty between changes.

Moms-A few med changes have done wonders, but I think the fabulous determination to be positive is what�s putting her over the top. She is walking better than we�ve seen in many months, talking stronger and is enjoying being waited on in her new home.

I almost forgot to mention the women's retreat: wonderful, sweet fellowship, deepened friendships, powerful teaching, moving worship, good food. So timely! Even came back to find my mom had made lots of progress on containing the overflow �stuff�. Ahhhhh. Blessings all around!

If any of you live near Macon or visit periodically, I'd love to go ahead and invite you to mark your calendars. Nancy Guthrie's Holding on to Hope is one I�ve enjoyed quoting here. I have so much respect for this helpful book and author who has embraced God's sovereignty through a very difficult life journey. Nancy will be speaking at my church to the women on Jan 16th and 17th! How cool is that? I plan on being there with wee one in tow. :o)

I really am working on a picture entry to post soon, really! I should have more fun ones to include from our swimming and playtime today w/ my parents. Happy 4th!

Blessed,
Allison

Thursday, June 26, 2008 11:28 PM CDT

I can�t seem to find time to write an entry to adequately cover the past couple weeks. It�ll be at least a few days before I even attempt, so I thought I�d drop a quick note.

My grandmother came home from the hospital after a couple days, but still wasn�t full-strength so she stayed at our house. My Mom arrived last weekend so my grandmother could spend a few nights in her apartment before moving to assisted living. Moms is enjoying her new setting and Nana will be here another week to sort through the excess contents from the apartment. Even though �garage sale� sounds like a lot of work, we may have to break down and have one next weekend in order to reclaim my house.

God�s provisions have continued to be so detailed and full. In my pregnant state, I overestimated my stamina and overdid it, but am recovering. Even with the contents of my house in such disarray, He orchestrated my schedule to FORCE me to sit. Today I was mostly off my feet due to a Savannah trip. (You know you�re a special needs parent when your bragging rights include jamming 4 dr�s appts into one day!?!?) Tomorrow I leave for an overnight ladies� retreat in Atlanta. I can�t wait for my time w/ just the gals and lots of spiritual meat!

Even though it�s been a different kind of very busy, the summer is plugging along. The kids are having a blast and Jason's enjoying days off here and there.

Very Blessed,
Allison

Monday, June 9, 2008 11:09 PM CDT

Just a quick entry to ask for prayers for my grandmother. This horrible heat (101 degrees still at 7:00 this evening!) and possibly more have taken a significant toll on her this weekend. Physically/cognitively she is not at all herself and has been admitted for a work-up. Today worked out beautifully with God�s provisions and I look forward to seeing how He will orchestrate the rest of her stay/my more significantly divided responsibilities. I already loved how camp is going for Lydia and now see even more intensely how perfect the timing is. God is gracious!

Thankful to have Moms close enough that I can help and coveting your prayer support.

Allison

Monday, June 2, 2008 10:44 AM CDT

We made it to NC and back, with one tornado greeting us at the hotel and aftermath of others waiting for us back at home (not personal damage, but worst hit in 50 yrs for our city). Thankfully we hadn�t gotten Lydia up to the 7th floor of the hotel before they shut down the elevators and had all guests gather in the ground floor stairwell! We were overwhelmed by the eagerness for strangers everywhere to help with Lydia. A fellow with what looked like stitches across his head from recent brain surgery was even collaborating to get our luggage out of the lobby.

Friday we headed to the hospital for Lydia�s appt. The doctor was all we�d hoped he�d be, easy report/mutual understanding, very bright and eager to think outside-the-box. Lydia's GI problem just isn't common enough for a textbook answer to be available.

The first test was done while at clinic, a sitzmarker test. This involved getting some tiny plastic �cheerios� into Lydia�s stomach, so they could be followed �out� by x-rays over the next few days, documenting her functional motility. The challenge was that most just swallow a capsule full of the circles. That wasn�t happening, but we'd driven a long way and were not ready to give up easily. Jason pleaded with the researcher within the doctor to be creative...and we got them in! We temporarily removed her feeding button and the doctor loaded 2-3 markers at a time into a tube and poked/flushed them through the hole in her stomach...until all 20 something were in place. First x-ray down and we were back to the hotel for two days of relaxation. The x-ray confirmed that air really is our issue, no longer constipation.

Monday, the second test was preformed with doctor at Lydia�s side to watch. This was anal-rectal manometry, which means they stuck an expensive straw up her rear with an inflatable balloon on the tip. I learned that you have two anal sphincters. The external one is what those who are �potty trained� have control over. The internal one is supposed to relax involuntarily when pressure/bulk is felt. For a typical child, 10-20cc of air at the tip of that straw would have provoked muscle relaxation. They were really getting worried when Lydia�s wouldn�t relax�until over 100cc of air! Thankful it did relax, although she�s obviously been distended for a long time. This wasn�t that helpful regarding treatment plan, other than to rule out total lack of nerve sensation/response in that area.

The wonderful news is that Dr.F is the first to think that a cecostomy may well be a good option. This is a far less invasive surgery and does not require a lifetime of high maintance care like the ileostomy. The verdict is still out, but we were given hope! Wednesday he will meet with the surgical team at the hospital to discuss Lydia�s case. The cecostomy requires putting another hole in Lydia�s abdomen, like her feeding button, but in the colon this time. Typically this is used to administer enemas for constipation. His question of the surgeons is why not trying this for a decompression outlet? (We asked this question of a lower level of GI consult and got the answer "no, hasn't been done" rather than, "Well, why not?")

The doctor also had a wonderful sense of humor that took dry to a new level (Jason ate it up!). He has been good to keep in touch and we expect one more trip back this summer for a possible third test and surgery.

Lydia is doing pretty well and even Dr.Fortunato was quite pleased with how we are dealing with her discomfort/gas. He actually has seen excellent results from use of the rectal tube, but rarely can he get his families to use it. The vent bags, continuous feeds and elemental formula were also applauded. This affirmation was great, as we�d been previously told that we were just band-aiding the situation when she really needed an ileostomy. We are now thankful for our hesitation and trust that we will have more confirmation if that really is the route Lydia needs.

Lydia came home with her first EVER case of pneumonia. She also had an ear infection, along with two of her siblings. The third sibling was just as goopy, but didn�t get to the ears. We hibernated with three different antibiotics!!! (Thankfully we have one adopted child who's not allergic to anything yet! The bios are killing us. :0) The hardest part was the antibiotic�s toll on Lydia�s tummy. Finally done with that too and transitioning into our next season.

School is out and �summer school� about to begin. We budgeted summer day camp with Lydia�s Medicaid Waiver. This starts tomorrow and lasts 9 weeks. This will be the first year they�ve braved tube-feeders or a child as �medically fragile� as Lydia, so the director is as thrilled as I am with the location choice. This camp, which changes locations from year to year, will be housed in the elementary school across the street from our house this summer! God�s detailed blessings never cease to amaze me. Praying that this will be a good fit for Lydia and really benefit her this summer. The camp is the project of two �veteran� special needs moms who have been just amazing resources for me.

Lydia�s camp should make it easier for me to keep the younger ones more stimulated: summer reading programs at the church and library, swimming at grandparents, maybe even some play dates�which we�ve not taken the time for since they started school.

We also have horseback therapy continuing and going very well. All the kids love going out to the barn, aside from Sophie-dirt and animals, ick!

The Tripp family did have two Birthdays in May, Caleb turned two and Amelia five. My wee ones are growing up! I can�t believe it�s June already! Second trimester already, just as school let out. Isn�t God�s timing amazing? That means less fatigue for me pregnancy-wise. :o) And Jason is home off and on for the summer as well. Fun times!

I hope to do more exciting pics for the next update and less medical stuff. It was time to report though!

Allison

Wednesday, May 7, 2008 8:30 PM CDT

Friday was a big day for our family, immediate and extended. The day started with a precious phone call announcing the birth of my new nephew, Joshua Leo Smith:




Then we were off to Amelia and Lydia's first horseback therapy sessions (starting at 8AM!?!?). Amelia loved it:


Including riding backwards for the extra balancing challenge with nothing to hold on to:




Lydia didn't mind it either:


And Caleb was outside, so there was no need to talk him into having a good time!




Next was distributing girls at school, lunch, nap, and meeting the moving truck with Mom's belongings. Here's the traveling crew just after the truck was loaded in MS:



Moms' arrival:




And our first meal in the club house:






Since Friday, we've had another noteworthy picture, confirming just one perfectly-sized baby:


And I have to include a couple more Joshua pictures from the week!




We leave tomorrow (Thurs) for Lydia's GI appt in NC. Little girl has been particularly irritable this week, so I'm thankful the time is here. Hoping for some relief!

Thank you for your continued prayers!

Love,
Allison

Monday, April 28, 2008 9:04 AM CDT

There are lots of new pictures in the album and big news to share as well.

Lydia has a date for NC, Friday May 9th. She has an appt with the motility specialist that afternoon and then depending on his take on things, she may have an inpatient lower GI clean-out over the weekend and testing Monday.

My mom and grandmother will be at our house to hold down the fort with the younger three. My grandmother will actually be a new Macon resident by then! While Moms wanted to stay in her home, logistics did not come together, so�she's about to start this new chapter of her life with us. I loved spending a week or two at a time at my grandparents during the summers growing up. I have never been so privileged as to live in the same town as them though. Now not only will I get to spend more time with Moms, but my children will be able to grow up really knowing their great-grandmother. Priceless! Hopefully they will provide much joy to her as well.

Moms will be in an independent apartment with two-bedrooms, so my Mom and others can stay with her when in town. Caleb has helped me apartment and furniture shop. Need I say he was a huge hit as we visited this retirement community? I predict that having the kids hanging around will draw as many new friends as Moms could possibly desire. :o)

It has been such a sweet experience to watch as God has once again orchestrated every detail for this challenging time with tremendous care. Mama's been in MS since just before Pops' death. She has enjoyed reporting as different family and friends pitch in to meet every need�packing, shopping, driving to doctors' appointments, and more. My mother's friend, Jane from FL, even flew up to help and will be part of the caravan driving to Macon Friday. One of Moms' brothers and his wife will also be able to come and help Moms make some dear first memories in her new home. We certainly covet your prayers for this transition time.

One of the fun distractions for Moms and me is a precious surprise that was discovered the day after the funeral. God took and gave from our family just days in a row. While mourning Pops' departure from us, we are celebrating promise of a new life. We are expecting baby #5! How dear to be able to share this news with my grandmother in person! I've held off my u/s appt until after she comes, so we'll be able to enjoy the first glimpse together (along with Jason of course!). Can't wait to post a picture here as well! The appointment is a week from today. At that point I will be just shy of 10 weeks along. Again, knitting this baby into the family so intimately from the beginning, the due date is Dec 3rd, Jason's father's birthday.

Jason's enjoying the extra days till the u/s as he gets to tease about how many babies are in my tummy until the visual. The girls' conversations are full of joy over the promises ahead in our family's life�Moms AND a new baby! Wow!

Busy, Excited, Tired, Thankful!

So Blessed,

Allison

Saturday, April 5, 2008 7:44 PM CDT

So much to write about!

The most pressing is that my maternal Grandfather went to heaven this morning. He has been in chronic pain for years due to a neck injury and congestive heart failure, so we are relieved for him to receive his new body and be in His glorious presence. Amelia summed up the grief though with her emphatic but succinct response of "No. No. No."

Since my childhood, Pops has called me his favorite granddaughter, just to provoke "Aww Pops, I'm the only one!"

We all relished our time with Pops and I can't get enough of that mischievous twinkle in his eyes:


Amelia also hit it on the head when she said "but that's so sad for Moms". We celebrated their 60th wedding Anniversary while over the Thanksgiving break. Please pray especially for her during her unimaginably difficult transition.

I'm praying that Lydia will be feeling better by the time she needs to travel. She's started a last resort drug, a new antibiotic, for her tummy. I'm hoping the initial increase in discomfort means that something's dying off. A girl can hope right? We're still awaiting a date for NC. Our trip to Savannah went great Tuesday (was that just this week?). It's been a whirlwind since then, with a couple good naps in there too, for me.

That has been actually one of my themes of late. When mama came into town, I crashed. I napped almost daily and then when Jason and I left for our impromptu "retreat", I took three naps the first day alone! Jason took two at alternate times. :o) We hardly saw each other that day. We did venture out on walks: around the neighborhood, to the beach, and to a great seafood restaurant. I even painted my toenails, took long baths and read a novel. It was quiet and sweet to be able to focus on just catering to each other. It's easy to forget what those days were like! We left refreshed and eager to return to our brood.



Was it restoration from the past months of interrupted sleep or readying for what's ahead? I think both! This week's trip to Savannah wore me out again so quickly. I underestimate the stamina such takes. The week's schedule continued heavily for another night/day then I tried to regroup around here. Don't look in my living room, which holds last season's clothes fresh out of closets and the pile of toys I'm culling down. The bedrooms are functional though and almost all of the laundry is clean! Yeah!

Bible study starts back this week and I will miss it! :o( Can you believe God granted me perfect attendance for the last study? And this was during cold/flu season, while my two middle ones started school for the first time. Talk about miraculous! I will be eagerly reading while on my trip. We are studying "When God Weeps" by Joni Eareckson Tada and Steve Estes. Such excellent writing and challenging yet inspiring content! I can't believe that this is my first read of her books. It won't be the last.

Jason received confirmation this week of a lateral move that he's been hoping for. He'll be teaching at a new high school opening next year (Howard), which is half the distance from our house than his current location. It really has been a great teaching year for him, with exciting promise for next year as well.

Today was to be the build day for Macon's new handicapped usable playground. The storms meant we hardly got started b/f all were sent home. I hate that it didn't happen as planned, but sure did appreciate the time to organize our week's events. Jason's parents were already on duty watching kids for the build, so they took the most verbal ones for the day while I packed. God is so gracious even with the details. Jason cannot afford to miss many days with AP exams approaching soon for his students. My dad is heading on to MS early though, so I will be able to spend the whole important week with family.

I emailed the details of the plans to a dear friend and she just laughed. Yes, he's provided, but how complicated! Our driving day even starts with a detour at the dentist office since I just can't bear to reschedule three kids' cleanings.

Just yesterday I spent time with a lady who's stepped up to be a co-leader for the special needs moms' Bible study. Not only do I already love Maribeth just for who she is, but she is fully prepared to lead in my absence...even before we were aware of the need. He knew.

He also knows what Lydia needs for contentment, but He hasn't chosen to fully reveal that yet. Although Lydia is sleeping better (huge praise!), and not requiring the same frequency of intervention to relieve her abdominal pressure, she's basically just tolerating us lately.

No smiles:


There is a little more opportunity to enjoy life with the arrival of her new vibrating bean bag and swing last week though. No pics yet, but the bean bag is her new favorite spot (aside from being held of course). Please keep praying for personal support providers. We have money now, but need caregivers to hire.

I don't think I ever posted a finished pic of the play set. If you look closely you'll see Sophie flying through the air on the swing:


From my childhood, I remember dressing up my toddler brother in girl clothes. It's started here, but not exactly clothes yet:


Before you feel to sorry for the boy, let me assure you he's had his influence on the girls too:


And he also got Nana smitten while she was here:


I do have plenty yet to do this evening, but didn't want to go another week without an update. I'm sure I left things out, but pictures are worth far more than words right?

Continued Prayers and Blessings,
Allison

Monday, March 31, 2008 9:39 PM CDT

Lydia has made a little improvement since the last entry, but not significant overall. So, we're headed back to Savannah for an impromptu follow up in the morning. Our family has enjoyed lots of fun activity recently including spring break, a visit from Nana (my mom) and even a weekend away for Jason and myself! Yes, it was fabulous and long overdue.

I look forward to elaborating soon, but for now, thank you for prayers regarding travel tomorrow and more clear direction from the GI.

Love,
Allison

Tuesday, March 11, 2008 10:23 AM CDT

I'm so excited to share how God orchestrated this step of our journey with abounding loving care. Friday was just a precious day, worthy of its own entry.

The night b/f we left, my mother-in-law had the foresight and willingness to offer to take Sophie and Amelia to school for me Friday morning. I had just eagerly accepted her offer when I got a sweet email from a friend asking me to let her take little Caleb for the day. Tammy doesn't usually have Fridays off, but that's how God arranged her schedule this week. The mama/son thing is so different...I actually hesitated, knowing I'd miss him, but good grief. I came to my senses and realized how much easier it would be on him and me to just say yes and thank you! It sounds like Tammy and Caleb indeed had a sweet and fun day and I wasn't entertaining a stir-crazy toddler in the van or the other confined spaces of the day.

Sophie and Amelia were settled at school and Jason's after-school meeting was able to be moved to his planning period so he could run carpool. It really wasn't even a concern though; b/c another dear friend had offered to be on standby. Jason managed well and even had the girls in bed by the time we got home. God gave me such a helpful hubby! So that's how the day went for four of the Tripps...and now to me, Lydia and my mother-in-law, Beth.

With the anticipation of rain, we started our three hour drive five hours before the appointment, to allow plenty of extra time. The ladies at Duncan Donuts had a notoriously hard time filling our order, but almost all the extra items which they thought we asked for ended up hitting the spot before the drive was over. The undrinkable latte even provided for the best belly laugh we'd had in a long time as Beth tasted it to confirm my review. Was that hazelnut or floor cleaner they added?

The dreaded rain STOPPED as soon as we got onto the interstate. The only precipitation we saw all day was a few sprinkles as we started back towards home, while it was still light. That was it! We had safe travels without the stress of bad weather.

We arrived with enough time to scout out our destination and make a few nostalgic stops from Lydia's early years (lots of hospitalizations in Savannah). First was our favorite little children's boutique, where Grandmommy found Caleb a sweet Easter outfit and a new diaper bag for his early bday present. Next, we just squeaked in under the serving cut-off at our choice little Italian restaurant with the best breadsticks. Nothing like making a utilitarian trip fun!

Lydia soaked up the attention and didn't fuss a bit as Grandmommy held her through lunch. Can you say spoiled? She may want to go to Savannah every day. I did have to give Lydia a little medicine to take the edge off on the drive over, but other than that, she hardly made a peep until we got to the doctor's office. It was good timing when she could get out of the wheelchair for more cuddles, some tummy time and a good back scratching.

Beth had offered to do the driving so I could tend to Lydia and put my thoughts for the appt down on paper, three full pages of info: Lydia's meds, GI history, and questions. We waited an hour and a half after our appt time before the doctor got to us, but we had no engagements or responsibilities to fret over. Once we had Dr.Rittmeyer's attention, it was ours for an hour! I got him up to speed pretty quickly and asked about the five options we'd been given by the last GI. He went over all these options and a few more in detail, with plenty of insight and humor.

Of the five things, he only thinks one will be effective. This is the ileostomy, which is the most dramatic and involves the most significant increase in care. He's committed to help us take every step possible to assure that it is indeed necessicary and that it would resolve the discomfort. The hope is that Lydia would be so much happier that the care would be well worth it. That we wouldn't be putting out so many little fires all day/night long, but rather be able to work this new aspect of care into our routine.

In the meantime, the plan involves potentially three more steps before surgery. These problems could be due to overgrowth of "bad" microorganisms in the gut. Lydia has been on gut sterilizing antibiotics due to this theory in the past, but those meds don't cover the full spectrum of possible culprits.

So�.

Step 1: In order to thoroughly rule this out, Dr.R is starting Lydia on 10 days of a different med, flagyl.

Step 2: If we don't see a dramatic improvement with this course of flagyl, we're going straight to ruling out yeast overgrowth by giving her difulcan for 10 days. He said just to call for that script. After the week I'd had w/ the phone messages just to get on the schedule, I asked if he'd go ahead and write the script and I'd wait and fill it only if needed. He obliged me as he also did with the flagyl. The flagyl was going to be three times a day, staggered with her twice a day probiotic since the flagyl could kill off the probiotics if given at the same time. "Seriously," I asked, "five times a day meds?" He changed the dosing for a more reasonable med schedule. It's just so good to work WITH a doctor regarding Lydia's care!

Step 3: This one stemmed from another question I posed. It stopped him in his tracks when I inquired about the value of anal rectal manometry. I said that I knew this would be out-of-network ($$$) and a drive to North Carolina, but would it be WORTH it? "Wow, good question. Let me finish this train of thought and I'll address that next." This was the tone of the whole conversation. It was one affirmation after another for my efforts, research, and care, all of which have seemed so fruitless with Lydia's continued discomfort. Some doctors get very cocky and defensive when I approach with a list of educated questions, but Dr.R ate it up and willingly thought out loud with me (ego not too big to get in the way). He does really like the idea of this sophisticated test, which would measure the strength of contractions throughout her GI tract to see where the hang ups are. This would be the best way to assure us that the issue involves a large area that needs to be bypassed out to her side, rather than a smaller portion that could just be removed...keeping the more "natural" elimination process intact.

He actually didn't know pediatric manometry was available in the Southeast and is eager for me to pass on the specifics. The instant report was just amazing. I had to laugh when he got to one option and said "Now this is the most stupid of the ideas." When I asked for steroid cream to address the way her g-tube has started looking, he said "Wow, your house must be immaculate." He's obviously never seen my house, but I do have a higher standard for holes/hardware in my child's body. :o)

After he returned from writing scripts, I told him I had consulted my list and had a few more questions. He sat back down! I am so used to trying to focus on what I need to cover while a doctor has his hand on the doorknob or one foot literally out the door. It was just a refreshing visit all the way around. Lastly we addressed the next appt. More affirmation, this time regarding my persistence to try Savannah before Atl. Dr.R makes four for four Savannah specialists that not only listen and explain their thoughts well, but end the appts with "When would be convenient for you to come back? Do you have any other appointments we can coordinate with to make this easier for you?" I assured him that at this point, we'd come whenever he wanted, but it would be great to be able to coordinate with the urologist we've also been referred to in Savannah. He wants to see Lydia as soon as she finishes the second med, so 20 days, give or take as needed. After spending months just waiting for someone to take the lead, we have a tight plan of action. I love it! In the meantime, I am to follow up on the NC test.

If it were up to me, I would have chosen to get in earlier with this GI, but God's plan was better. Lydia's new Medicaid Waiver went into effect March 1st. This is a resource to help with some of the out-of-pocket costs of her (in-state) care. So, even though it won't help with a potential NC venture, the timing is obviously providential. We'll be reimbursed mileage for Savannah trips. The continued over-the-counter probiotics and laxatives will also be reimbursed, which is significant. Funding has been designated to pay for caregivers, 28hrs a week for Lydia, a first. We just need to find the staff (someone w/ CNA or greater). So, potentially, even if we end up with an ileostomy, we can have help managing it from the get-go.

God is Sovereign whether or not I feel "supported" by the doctor or agree with the plan of care. I am still so thankful for such abundant provisions. It makes it easier to rest, even while Lydia continued to cry all day yesterday, knowing we have this very proactive plan in place.

Thank you for your past and continued prayers and words of encouragement. They are such instruments of His sustaining grace!

Love,
Allison

(Since I originally wrote this I have learned that insurance SHOULD cover the NC testing since it isn't available in-state. The prior-approval/justification process intimidates me, but my mom will be here for two weeks starting tomorrow. She should be able to pick up some of my slack while I try to figure this out, another perfectly timed provision!)

Saturday, March 8, 2008 9:23 PM CST

I can't wait to share the detailed blessings of yesterday, but for now WOW! The trip and appointment couldn't have gone any better. Thank you for all your prayers!!! God answered in a mighty way. No conclusion yet, but I feel like Lydia is now under excellent care with a fabulous plan of action in place. Praise Him!

More soon!

Love,
Allison

Thursday, March 6, 2008 10:28 PM CST

It's late and lots yet to do before bed, so this will be short. I wanted to ask y'all please be to praying for Lydia's appointment tomorrow, Friday. We will be seeing a GI for a second opinion at 3:00, in Savannah.

The last conversation with the local GI left us with a surgical referal to discuss five options. I would really like some help narrowing that down/prioritizing, thus our trip to Savannah.

Please pray for clarity during the appointment and great wisdom for Dr.Rittmeyer. We need God's help and hope he'll use this man to put us on the right path!

It has been a long process to get to this day, and Lydia has been miserable for so long that we are READY for something to change, even if the solution isn't pretty.

Resting in Him,
Allison

Sunday, February 10, 2008 10:08 PM CST

First the latest QUOTES:

After reading the Bible story about baby Moses being adopted by the princess, and talking about adoption...
Sophie: Mama I wanted to be adopted by you. I was waiting for you.

Amelia: What's that I smell?
(I'm thinking, are you kidding me? I just changed three dirty diapers!?!?)
Amelia: It smells like chocolate.
Sophie, with an impish grin and pointing to her skin: It must be me!

Amelia: Guess what mom? God gets to go to preschool today!

Sophie: I told my new friend at school that my Daddy is a big drink of water.

And a brief LYDIA update:

We are still struggling to get to the bottom of Lydia's discomfort, irritability, irregular diaper habits and inability to sleep. Since this is dragging out so long, we even attempted to trade out her sleep med to see if a new one would be better. The results were a day of extra sad screaming and sweating. She's addicted to the first sleep med, so we'll have to wean more slowly. Even with both at full strength for now, she's still not sleeping consistently.

Lydia is cutting four molars, but that hardly seems significant enough to merit this kind of a reaction. Soon we should have lab results to confirm or rule out the latest theory of yeast overgrowth in her gut. This would be easily treatable. Otherwise, the local GI has nothing else to offer besides surgery, an ileostomy to reroute her poop to an external bag. Since the justifications for such measures are not clear, we want a second opinion before taking this step. We're praying for yeast. :o) Second choice would be a vacation to Savannah with a consult while we are there. Why not keep the specialist trips clustered.

Now back to the series,
Rolling into 2008 for the Tripp Family--Part Three

CALEB and Mama, Jason too:

Seven years ago, baby Lydia started to prove that she wouldn't be the firstborn baby we had imagined, not a healthy and fancy free addition to our life. God has given so much more in place of that dream, but the loss was still a very real grief. Most of my one-on-one time as a mother was spent holding sleeping Lydia or managing her medical care.

I had no idea He'd allow me to realize a form of that dream now, through Caleb. Our days actually include putting puzzles together, stacking blocks and much flirting! Caleb also gives me hugs and kisses all day long. He thinks everything I say and do is just hilarious too. We are both eating this up!

It's not daunting to zip over to Lydia's school when they call (often lately) or to manage Lydia's doctor's appointments and Amelia's therapy meetings. It is different. For this season it is good.

The day Sophie and Amelia started 4k, I was loading the dryer, struggling with guilt over the fact that I didn't have them training along beside me. Then Caleb toddles into the laundry room and starts shoving wet clothes into the dryer as quickly as I could supply them. I could only smile. I was still training, just a different subject.

He is hungry for it too! He eagerly prompts me to help him empty the dishwasher and put up clean clothes. He independently puts away his own shoes, dirty clothes and shoulders any bags that I'll let him carry for me.



So, as this sweetness started, I imagined more laid-back days and schedule. After a month of it now, I'm realizing this isn't quite the case. Week one was filled with Medicaid budget justifications. Week two was mostly spent at Lydia's school doing damage control to minimize her screaming, and running long overdue errands in between. Week three was consumed with preparing for a small talking part at our women's retreat. What a week that was, looking back through old journal entries, remembering the pain and the overwhelming provisions. It was emotional, exhausting and wonderful�as was the retreat. (If you'd like to read the testimony, I'd be glad to email it to you, or I may post it some time later.) Week four was catching up with household chores and another high maintenance time for Lydia. Last week included a late night out with the special needs moms group (15 attendees the past two times! That's a dinner party for sure.), planning meeting and emails regarding the design of a fabulous new handicapped accessible playground that is coming to Macon, Lydia doctor's appointments, therapy meeting for Amelia and just the daily stuff. We've also had some minor kid illness thrown in there. They were not the only ones sick.

Like most, my immune system suffers when sleep is interrupted. In December, Lydia's irritability and poor sleep started. By Christmas I had a sore throat. I've fought that and/or a cough ever since. This week I finally coughed so hard that I pulled something in my back. It's quite pitiful, but I'm thankful that I actually can nap when Caleb does from time to time. So I've enjoyed the fact that my present challenges are nice direct reminders to pray for friends�the back takes me to pray for a dear friend who's on bedrest with a painful back. Sleep struggles/tummy trouble takes my prayers to Nathan's mommy, link at the bottom. And formula/tummy troubles to our little friends Katie and Naomi (Naomi's page: www.ashleyfamilymacon.blogspot.com.
Amelia LOVES to pray for Baby 'Omi. Hearing her pronunciation is about the cutest thing I've heard. Almost makes me want to have another girl, just to name her Naomi!

I somehow thought I'd be doing lunch dates and other extra curricular things by now. Not yet, but I have been able to make it to Bible study every week. This in itself is amazing this time of year, with so much sickness around. What a sweet small group it is, challenging study and precious time of prayer each week with the fellow leaders.

On paper, I don't feel like I've accomplished a whole lot with the school shift. Some of those "little" things that have a big impact are finally becoming consistent though. We are finally getting the kids to bed on time, with Bible story reading and prayers. This means thinking about supper during the 4:00 hour, which is just unnatural! Things are shaping up differently and my list is getting addressed more diligently. It's just slow. God's graciousness is obvious, in lightening my schedule while the sleep is scarce and responsibilities continue.

JASON:
Jason is not getting as much sleep either. God knew this would be the case when he ordained Jason's schedule for this semester. For the first time ever, he only has one class prep. Jason is teaching AP Statistics three times a day, then a planning period. He's pretty much taken over Lydia's bedtime needs, which are extensive, so I can read to the younger three.

When the weather is right, Jason comes home from work and heads straight out back to work on a wooden play set he is building.





(I'll try to download better pictures of the actual playset and insert here.)

My family visited the end of December and the men collaborated to start the construction. They were all gone by though by the time Jason had the two heavy towers ready to be lifted into place, which brings me to one of my favorite stories thus far in 2008.

New Year's Eve, Jason was working on our third car, his beloved first vehicle, an '85 Toyota Celica (pealing paint, hadn't run in months �). He was trying his hand at changing the fuel filter. The leaking fuel and the attempt at starting the car were a volatile mix and the car actually caught fire, with Jason IN IT. God protected him, our house, and everything outside of the car�despite flames that reached the top of the basketball goal before the firemen arrived. It was a very real loss for him but he has also been able to laugh about the fact that this is probably the only way I'd ever have gotten that car out of our driveway.





Almost two weeks went by while the sad wreckage sat. Being that the car was not valuable, we did not have any comprehensive insurance on it, no reimbursement. We were just trying to figure out the least expensive way to get rid of it. Jason was on his way home from the store with a penny pincher, for the sake of the junk yard's towing number. His mom and I both had gone out specifically for that purpose the week prior, but had forgotten to pick one up. God's timing was sweet. While waiting for Jason to come home and make the call, I heard a knock on the door. When I opened it, a couple blue collar men greeted me. They were inquiring about buying the car in the driveway. I paused. They verified "the Celica", and I assured them that we would be interested in selling it. Already I'm struggling to keep a straight face, and they ask me if anything is wrong with the car. "You did notice that it's been on fire, right?" I answered. The response was "Yes, I see it got a little hot, but anything else wrong with it?" I called Jason to come on home. They bemoaned to me that they sure hoped it was in their price range. I assured them that they were welcome to make him an offer, and I think it would be well within his range.

Some of Jason's friends were lined up to come over the next afternoon to offer their backs to lift the play set towers into place. My wise husband included help with that task in his bargaining for the car. On top of the play set labor, Jason made $100 and they took it off our hands within an hour. Then God sent a fabulously heavy rain overnight to finish up the job of washing off the soot-laden driveway. God is so creative and thorough!

Jason is thrilled that his men's Bible study group started back this week. We also continue to enjoy date nights as we swap off babysitting with another family. I am realizing that it's been a long time since we had more than a couple hours off by ourselves. This year is our tenth anniversary and we really want to take some kind of vacation together a priority. My little man even proved that he can take a nursing break and pick it right back up with the recent women's retreat. I can't wait!

In summary, we are busy, enjoying life, tired and continuing to see God provide! God is good, all the time.

Happy Valentines Day my friends!

Love,
Allison

Thursday, January 31, 2008 7:22 PM CST

I interrupt this series merely to share about my mundanely great day.

Thursdays are supposed to be catch-up, after such busy Wednesdays, with morning Bible study and evening choir and classes for the kids. This means that Wednesdays generally close with a monumentally messy house.

Then Sophie and Amelia woke up sick this morning�Caleb and I are on the upswing, but not full strength either. And Lydia continues her long stretch of being irritable and "off", although she is the only one that still went to school. Anyway, I figured that today had instantly become a wash, just survival.

God had other plans in my weakness! Yes, we watched movies, cuddling some but also managing to fold some clothes. I heard back from the GI regarding the need to prod further regarding Lydia's tummy trouble. (Yeah!) A friend came over to stay with the three youngest so I could take Lydia for tests, and cleaned up my kitchen while I was gone! All three kids got great naps too, which their bodies really needed.

Lydia had an abdominal x-ray. Then we walked over to take care of overdue labs, while I was already parked in the right area. I drew the blood myself from Lydia's port, and checked off an overdue "monthly" flushing.

We finished just in time to keep my postponed meeting with the parent mentor from the school system. Lydia was fussy, which gave me the nudge I needed to pick her up while I listened. Cuddling with Lydia for an hour and a half in itself would have made this day significant and productive!

While we were enjoying each other and I was learning about resources, the director of special education for our county walked through. He introduced himself and asked if he could be of any assistance. (The man doesn't know me yet. Dangerous question.)

A valuable component of Lydia's class and the older special needs class at the old school was a swing for the kids. Hopefully as a result of our conversation, these swings, that have been shelved since the move to the new school, will be hung sooner rather than later. These fussy little girls need some distraction, not to mention relief for their teacher! God even gave me the clarity of mind to remember to follow up last night with the requested email reminder (and I could still locate his card).

When Lydia and I arrived home, Jason was almost finished feeding the rest of the crew. This allowed them to be in bed, even after baths, reading, prayers and a visit from Grandy, by 7:30, on time! They are feeling better too. Also, we got approval today for the vast majority of Lydia's Medicaid budget! Even the swing and bean bag passed, but not the boom box that makes the bean bag work. :o) I'll get researching options/best prices for that soon.

To top off the evening, I got to see fabulous pictures, from the womb, of my new nephew! Check out Jeffrey and Laura's blog to view the wonder of creation and 4D ultrasound. http://www.lauraandjeffsmith.blogspot.com/

Yesterday, a dear friend, whom I'd lost contact with, called out of the blue just to chat. It was so fabulous that I decided to initiate a similar call this evening, to my old art teacher and friend who has been on my mind. And yes, I was able to find her new number and she was home! We were able to touch hearts, share stories and thank Him for the fun ways and the painful ways He's been working in out lives. Priceless.

What a sweet productive day! To God be the glory. How often do I spin my wheels on tasks without consulting God about my day's plans? I don't presume that glorifying God and enjoying Him will look the same from one to the next. Regardless, there is such freedom in only shooting for just one right agenda. I must be reminded that His agenda always works. Trying to do mine, alone or along with His, crammed into too little time, never works.

Thank you God! Can't wait to see what you have for tomorrow!

Allison

Tuesday, January 22, 2008 7:09 PM CST

Rolling into 2008 for the Tripp Family--Part Two

SOPHIE and AMELIA:

A few quotes first,

Amelia: "But Mama, I don't have to pay my consequences. God already paid them!"

Sophie: "Will I be a mommy, then see Jesus when I go to heaven?"
Me: "That's typically the order of things. Most people live long lives until they are very old, then they die."
Amelia: "Unless they smoke?"
Me: "Well, yes, that can shorten your life."

And then on to the update,

I've spent the past several months pursuing a developmental evaluation for Amelia. The results were not surprising. She tested at or above normal in areas of communication and speech, borderline in fine motor and behind in gross motor and self help (potty training being a biggie there). My goal for this process was to acquire school-based physical therapy services while keeping her at home. My plans came so close to being fulfilled.

Proverbs 16:9
9 In his heart a man plans his course,
but the LORD determines his steps.

The final meeting regarding the school proposal happened just after our exhausting whirlwind to Savannah, which prepped me to consider options I wouldn't have even a week prior. After sleepless nights and much prayerful consideration, Jason and I decided to look at the school's proposal, a 4k inclusion class, for Amelia. The school is Butler, the same special ed preschool where Lydia attended. The class is one made up of mostly regular ed. students, plus 4-6 special ed. students. Two teachers (reg and spec ed) plus a parapro provide the needed supports for the special ed students to be mainstreamed.

The classroom contents and workings were impressive, still just from a practical standpoint, this didn't sound like life simplification. The girls would be served by three different schools (Sophie would be home, with her speech therapy at our neighborhood school two days a week). The director understood my concern and scurried off to confirm the rumor of the day. Indeed one of the regular ed. students, in the class across the hall, was moving over Christmas break. And of course, there is a speech therapist in house at a special-ed preschool. The rare, mid-year regular ed. slot was offered to Sophie.

It was so hard for me to admit that I couldn't do it all. I knew that I wasn't doing anything well though, as thin as I was spread with the basic demands of our lives. Parenting had become largely reactionary, the house was falling apart and the neglected to-do list was steadily growing. When I'm where God wants me, he provides the strength no matter how great the demands. I was coming up short this time though.

We had Christmas break to finalize our decision and talk it up. The first day back we just took both girls to visit. It was a feast for their eyes; all those educational toys, that we've acquired but never get around to pulling out, were within 4-yr-old reach. Looking at the charts and tightly planned out days, I mused at how hard I've tried to keep a schedule for them. And to top it all off, there is an indoor sandbox in each room.

So the girls started school and have done fabulously!


Sophie woke up the first morning exclaiming "I am so, so, so, so excited to go see brown kids today!" I can't take credit for thinking that through. God knew though. These classes offer something for our family that most private schools around here can't. The racial make-up is very diverse and actually Amelia is in the minority. It's a fun paradigm shift.

There have been a few hick-ups in these first two weeks of transition. Lydia's bus schedule doesn't jive with getting Sophie and Amelia to school on time, so I'm now shuttling to two schools each morning. It was overwhelming at first, and still requires an early rising for this night-owl. The time in the car has been such an unexpected blessing though. I drop off Lydia first, which affords me 30 minutes of captive time with the younger three. Starting our day together with an "extended" prayer time has become an instant habit. How long have I struggled towards that!?!? We set our hearts and minds on things above which sets fertile ground for great theological discussions.

The latest was started by Sophie: "Does Satan have any brothers or sisters?"

We talked about Satan's history and his company of fallen angels. Then she went on to ask me about idols (which she heard about in Sunday school).

I believe that the next hick-up stemmed from Amelia's endurance. Endurance is one of her more significant areas of special needs. By the end of the first week, physically and therefore emotionally, Amelia was spent. The result was reluctance to get out at drop-off. I parked, walked her in, and found a corner to pray, hug and laugh. She took me to her class and showed off her routine responsibilities, which includes using the restroom. (She's actually stayed dry three school days in a row! They take her often, but if that's what she needs�)

I hoped and prayed that this would be the end of the drop-off struggle. It wasn't. I respected the teacher's advice to not walk Amelia in, but it was hard. It got worse. We kept talking each morning and finally Amelia shared what would make it easier for her.

Amelia: "I want God to go with me to school."

Now that was an easy one to respond to! From that day forward, they can probably hear our van coming the last few blocks to the school. The girls and I have enjoyed loudly chanting "I will not be afraid, God is with me." It's been fun and it's built Amelia up to a successful departure.

The other conversation that seemed to seal the success was Amelia earnestly asking me why she needed to go to school. I explained that I love having her with me, but I want her to be doing fun things like painting, playing on the playground, cutting, gluing...rather than following me around to appointments and meetings. "Oh." That made sense to her.

Even during the emotionalism, Amelia didn't complain about any aspect of school except nap time. "I'd rather sleep in my own warm bed," she says. Princess and the pea is she!

Amelia's favorite story is that one of her classmates fell asleep on the potty. Sophie can't stop talking about playing on the computers and running in place during movement and music time. The story time about the mouse who got peanut butter on his underwear has become instantly famous as well.

Sophie's energy response to the more demanding days has been shocking. She is MORE wired when she comes home. How can this be? :o)

I've been up to the school on a few occasions and seen the girls in the lunchroom. It was too funny for me to have to scan the backs of the heads twice before being able to pick Sophie out. Then it was enlightening having to stop myself from micromanaging how Amelia approached her meal. Seeing these two grow a little in self-sufficiency is fabulous for the household. (They don't have to eat the veggies from their lunch at school, but they know they have to be eaten when they get home as snack part 1 if they want a snack part 2. And it's worked without nagging!)

I have loved having the younger three at home with me, and have developed a real heart for homeschooling the past couple of years. But, it wasn't working for our family in this season of our lives. It wasn't all bad, don't get me wrong, but enough is enough for this many wee ones spending hour upon hour at doctor's appointments unrelated to their care. Even when the reigns were kept tight enough to afford best behavior, I'd leave spent for the day and realizing I'd forgotten to ask the questions I'd gone in to get answered. Multi-tasking had turned into multi-forgetting. I'd still love it if God provided that dream for us. Right now, he opened other doors though.

The graceful responses we've received from friends who've made different schooling choices have been precious. I absolutely understand how other decisions are made, and agree with many of the arguments. Our prayer was that God would help us make the decision in which he would be most glorified. The respite looked sweet, but we didn't want an inappropriate compromise for our children. The affirmations have been many, which will lead me into part three of this update, Caleb.

Saturday, January 19, 2008 9:51 PM CST

Rolling into 2008 for the Tripp Family--PART ONE

There is nothing like a note in the guestbook to spur me on to write. Thank you, I needed that!

I said that I would update the page more after catching up on the mess and fatigue from surgery. Catching up never happened! It isn't due to any big medical crisis or event, just lots of little stuff mounting up. We've had many busy seasons with this crew. I look back on the time when we had therapies an hour a way, four times a week, with three babies to juggle�and remember how God provided the organization, strength, help, stamina and joy. In comparison, this season seems doesn't seem like it should be so hard to manage, yet somehow I have been overwhelmed. God is providing in a different way this time, but I'll get to that later.

If I tried to catch up in one journal entry, it would be colossally long, beyond my attention span much less anyone else's. So, I'll write this update in stages, broken down by family members.

Let's start with LYDIA:

Lydia has been irritable for a couple of months now. It's been a long string of "little" issues running back to back. I left off the last entry with neck surgery/ear infection. Those healed nicely, but were followed by a terrible yeast rash, then eye and bladder infections. Lydia had a strange response to the antibiotic for the later, clean diapers all day!?!? Talk about misery for the girl! The pee is easy enough to handle with the catheterization, but two weeks into it, and we are still fighting to get her GI system back in order. I'm cautiously observing for a partial bowel obstruction, but the doctor wants to give the quadruple dose of bowel stimulant a while to work before further investigation. Lydia's abdomen has looked a little better the past couple days. It had gotten HUGE and is still requiring venting on a greater frequency. Diaper rash is creeping back up, and I'm talking rashes so raw that they leave scars long after they heal. Fussy Lydia doesn't necessicarily sleep through the night either, so stack it all up and you get one blessed but tired mama.

The new Medicaid Waiver has also taken a surprising amount of time for budget preparation and justifications. I am excited and prayerful for approval and then carry through. We have asked for a couple of positioning devices that would be wonderful for entertaining fussy or hopefully even content Lydia. A new indoor swing will no doubt be a hit:

Then there is a vibrating, musical bean bag chair:

How cool would that be, topped off with a weighted blanket? I foresee real naps for Lydia if that comes through. Another big aspect of the budget was personal support hours. They have requested 28 hours a week of help for Lydia! At first the concept totally overwhelmed me, as we've always provided all her care. I'm warming up to the idea quickly though. The proposed schedule is four staff hours on the weekdays and eight hours on Saturday. The biggest challenge there would be finding the right staff. If God provides, it could change our load tremendously. Lydia's care first and last thing in the day are the most involved, as are the other kids. I could even split those four hours a day to cover these busy times and include things like bathing, preparing formula, setting up the feeding pump, dressing, diapering, and even entertaining. Wouldn't it be fun for Lydia to have regularly scheduled cuddle and/or reading times each day! We could also shift the hours for tag-along help with doctor's appointments or even personalized Lydia care for date nights or family outings when she "isn't in the mood for fun".

I have loved watching the girls stepping up to the plate even more with Lydia's care. God is certainly using these challenges to mold them in their tender years. One of Amelia's favorite nightly activities is gathering the supplies and helping her Daddy prepare formula and feed bags. The girls eagerly take turns pulling out catheter supplies and I even had to limit their preparatory help in that area. As sweet as it was, 4-5 yr olds just don't have enough awareness to set up a sterile field. Yikes! With Lydia's more frequent intestinal venting, I've needed leg-holding help during the day. They were champs at assisting me one day this week as we've been eagerly looking for anything to come out. Amelia had caught on to the importance and squealed for joy at the sight of "poopy juice". Gross I know, but it was funny in the moment. Wheelchair tie-down is now part of their daily routine and the girls even put on Lydia's socks and shoes(a two-girl-job on Lydia's ornery days) and strap in her feet into her wheelchair.
Sophie's also started asking to hold Lydia. So sweet!


I'm always amazed at the sheer number of people involved in Lydia's care come time to bake Christmas goodies. Village indeed, and her siblings are prime contributors. Even Caleb has learned that Lydia likes to be patted on the chest and he gladly obliges her.

Despite her vigilant and loving care, this has just been a tough time for Lydia, school included. She's had many missed days and just feels crummy so often when she is there. Skills from last year are slipping, like eating and activating the adapted toys. I've had a hard time following through with the eye patching as well, as it's just one more things to irritate her. Compared to her first three years, Lydia is amazingly stable, but we're just struggling to get her back to the healthy baseline that we enjoyed last year. Hopefully she's now on her way. She's slept through the night for about four nights now. Yeah! And we are getting some poop each day, even though not normal yet. The venting routine just hasn't been sufficient since her antibiotic, but prayerfully, it will be again soon.

We know that God is in control. He is good and everything He does is good. I also know that He created Lydia and loves her beyond our ability to grasp. I trust Him, yet it's hard to see with my human perspective, what He's accomplishing through this time for Lydia. There have been some significant sweet changes for our family born out of this struggle, which I look forward to sharing. I'll leave you with that teaser for part two of this entry.

Thank you for your continued prayers and interest in our family. It's always such fun to run into an old friend and learn that they are keeping up. Amazing and fun.

Praying for a year of growth and love for my family and yours!

So very blessed,
Allison

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