The Hull Munchkins

New Home

2009-08-16T14:51:00.010-05:00

We've moved!

Since adding little Levi to our family this summer it didn't seem appropriate to keep this blog address anymore: "abbyandjosiah"

This past Christmas I received a very unique and fun gift from the Hull family: a blog makeover and funds to make our past posts into a keep sake book.

Please visit our new "Home" to see the makeover and continue following our family's journey!

(http://patrickandpatty.blogspot.com/)

Welcome to the family Levi!

2009-07-28T14:35:00.006-05:00

(stop music @ bottom of page before enjoying the movie!)

Abby

2009-07-28T14:15:00.000-05:00

It's been a busy couple of months, but some how, with the help of our wonderful GiGai (my mom) we have been able to keep up with Abby's many therapies and appointments.

Last Thursday we spent the entire morning at Children's Rehab and were able to see several of her specialists. The dietician weighed and measured Abby then plotted her progress on the growth chart she's kept for the past 4 years. To our dismay we found her to be falling off the curve.

The past 3 years Abby has been growing slowly on her own personal curve, below the 3rd %ile. As long as she steadily progressed no one worried about her small size. Now she is quite a bit below even her own curve, and our dietician is concerned. We talked about using a higher calorie formula, keeping her on the pump for more hours during each 24 hr period, and a few other ideas.

After also discussing Abby's symptoms of discomfort during feeds in addition to her continued stubborn fever we decided on a short-term course of action. For 2 weeks we will try giving her smaller amounts of Miralax to help ease her tummy troubles. We have also started her on a daily regimen of probiotics. So far she seems to be somewhat better... but it's very difficult to know for sure what causes her hours of moaning/crying and finger biting.

The fevers continue to hit Abby just as we become hopeful that they have subsided. Along with the fevers also come the dreaded seizures. We have been giving Abby the clonazepam on the hard days when we fear the status (prolonged) seizures could strike. So far so good. It seems to help!

The whole fever dance has made us very weary. Not knowing the cause but having to watch the effects it has on our girl can truly drive one to tears.

... and also to our knees

1 month old

2009-07-21T20:54:00.004-05:00

Almost five weeks have passed since our little guy arrived. He's starting to fill out some and is so very kissable! He eats about every 2-3 hrs, and is making eye contact which we all love! Little smiles sneak out when he is falling asleep.

We are slowly getting back into some what of a functional routine. It's more like a messy juggling act! I am finally starting to feel better, not having to take the pain meds as much. Definitely enjoying not feeling sick anymore.

Funny Josiah story:

The other night Patrick told J to clean up his room and line up his shoes. J ran out and proudly announced that he was done. This is what we saw...

2 Weeks Old

2009-07-02T16:19:00.009-05:00

I can't believe our new little one is already 2 weeks old! So much has happened this month with our move and Levi's arrival I haven't had much time to reflect and collect my thoughts. While I recover from my c-section and try to slowly unpack our many boxes I hope to also put together Levi's first slide show/movie.

My wonderful husband not only stayed standing during Levi's delivery, but managed to video AND capture some priceless pictures of our son! I am so impressed with his many Skills!!

For now we just wanted to share a few photos of his first 2 weeks.

Introducing: Levi Patrick

2009-06-18T22:58:00.011-05:00

6 lbs 12 oz, 19 inches, born at 8:08PM on 6/17/2009

It has been quite a busy week. We closed on our new house and moved in last weekend. We then frantically unpacked and prepared to go to Connie and Matt's wedding on June 20th. But to our surprise at 37 weeks and few days, Levi decided to make his entrance. This followed Patty laboring all night Tuesday and Wednesday until we went in at about 6:00PM. They are both healthy, Praise the Lord!! I don't think we would have made it this far without help from Patty's mom!

Josiah wearing Daddy's helmet!

ER again

2009-06-09T17:46:00.003-05:00

Abby woke up sick this morning with a fever (101.5). After giving Motrin and her other meds she still went into a prolonged seizure. We caught it as soon as it started and gave the Diastat, but the seizure was stubborn and wouldn't stop. So, off to the ER we went.

It was 8 am so morning traffic was slowing us down a bit. Thankfully Patrick had come home and was driving us, so we got there as quickly as humanly possible. The staff were waiting for us and quickly escorted her to our usual suite. Within about 8 minutes they had IV access and the meds were on board.

All in all the seizure lasted about 35 minutes. She needed two doses of the IV seizure meds and some valium, but after about 1 hour she was resting quietly. As usual, all of the tests (chest x-ray, blood work, urine etc) came back normal. She's sick with a virus again.

Fortunately we only had to hang out there for about 4 hours before returning home again. The meds have made her extra aggitated, figity and grumpy. Her fever remains above 101 despite Motrin and Tylenol.

We are praying for a more peaceful night for Abby. The doc has ordered yet another seizure med to be added to her arsenal for the next 3 nights. We may end up using this medicine in the future when we anticipate an illness coming on, to prevent these long episodes.

Abby has an appointment with her neurologist early next week and an ambulatory EEG. Not sure if she will still be having that done after this weeks' event.

Another Milestone

2009-06-03T13:40:00.003-05:00

Last night I gave my 21st and very last Hydroxyprogesterone caproate injection! It feels so great to be passing this milestone and leaving this weekly routine behind. Now all the muscle knots and bruises can slowly disappear, leaving little evidence that I ever had to give myself these shots.

But of course I will never forget. Studies have shown that this medication helps reduce the risk of preterm delivery in high risk pregnancies. Thankfully we have been able to take advantage of new research, twice.

35 Weeks and our Baby Moon

2009-06-01T14:55:00.013-05:00

I had my OB appointment today and all is fine. Despite increasingly painful, draining contractions, no significant changes were found. The baby's heart rate clocked in at 140 bpm and he was bouncing away while the nurse listened. The cerclage stitch is still where it should be, doing it's job of holding down the "fort."

We discussed the plan for our pregnancy from here on out. Basically we will continue taking the Terbutaline until delivery day. She said that "text book" says it won't work past a certain point and will not stop True labor, but she has seen it work non the less. Once it no longer provides the desired effect, we will deliver. I felt relieved to get the green light to keep taking it until the wedding. Hopefully this will enable our family to ALL enjoy celebrating with Connie and Matt on June 20th!

Because of the contractions + the cerclage + this being my 3rd c-section, we decided to schedule the big day for June 26th!! I will be about 38 1/2 weeks. If the contractions should earnestly kick in gear before then, we will meet our little peanut sooner. Because of obvious reasons we are of course hoping to hold out as long as possible.

We'll see!

This past weekend Patrick and I had the most wonderful vacation!! We called it our "Baby Moon"... Honeymoon before baby. Grandma, Papa and Aunt Carolyn came to visit and kept A & J for us so we could get away... all 5 miles of it! We stayed in the Westin in the Bridgestreet Shopping center just minutes from our house.

(view from the court yard)

Our room was cozy and comfy with lots of extra pillows!! Perfect for an uncoordinated, poorly sleeping pregnant person such as myself. We enjoyed the pool, lots of sunshine and a relaxing hot tub. We actually slept in past 7 am and relished in the quietness of being alone.

(slowly making our way down the Looong hall way to our room)

(taking a breather from the Long walk... silliness)

Someone surprised us with a gift certificate to eat at Conner's which we thoroughly enjoyed! Of course we ordered expensive entrée's instead of the burger and salad we probably would have chosen other wise.

(finishing up some yummy, chocolate cake!)

Thank you to the generous Giver!

We felt so blessed!!

Abby is doing much better! She had a good weekend, which made ours that much better too. The continuous G-tube feedings are going well so far. She is getting Carafate (a prn reflux med that we've given in the past for flare ups) on a schedule twice a day. Perhaps this is keeping her reflux quiet. We still aren't sure what was causing her discomfort before, but hopefully giving her Jejunum a break from feedings will allow any irritation to heal and cool off.

The next step offered by her gastroenterologist was a tube switch and CT of her belly. We opted to wait and see if this break will help her.

She has been more herself today and was engaging during feeding therapy. As I type she is ASLEEP, which has not been the case for her afternoons lately. Praise the Lord!

Thank you to those who have been praying.

Fussy Abby at 34 weeks

2009-05-28T15:42:00.005-05:00

Our sweetie has had a difficult couple of weeks. In addition to the up and down temps (still not sure what is going on with that), Abby has been extremely irritable. Some days have been very long! A few of them she has been completely inconsolable. As with most things with Abby it has all been a guessing game.

Although she is on new seizure medication, which is a legitimate reason to be fussy, her symptoms seem to be linked to her J-feedings. Every day lately when we connect her to her continuous J-feeds she starts her moaning and finger biting. Long story short, she seems to improve when we stop the feeding and hold her upright. This includes late night, middle of the night and early morning episodes. Needless to say she hasn't been sleeping normally.

Yesterday we took her to the hospital for a fluoroscopy test of her tubes. Basically they squirt contrast liquid in each tube (G and J) and take multiple x-rays. It almost looks live as you watch the liquid going through the tubes. The result was that her tubes are in their proper place, not imbedded in her intestines or kinked or coiled. This test is not able to see tissue irritation which is what we suspect.

For now we are allowing the continuous drip to flow into her stomach through the G-tube instead of the Jejunum. We've slowed the rate down and are praying that reflux won't plague her.

In other news, we've made it to 34 weeks! The baby is clearly getting bigger and moves all the time. The contractions keep coming and keep me very aware of how much time we have left in this pregnancy. As I've mentioned before, I'll probably be stopping these meds in the next 2 weeks and this makes me wonder what will happen. I'm anxious to talk to our doc this coming Monday about our upcoming plan. So far she's mentioned scheduling the c-section at 39 weeks... if we make it that far.

It's getting exciting!

33 Weeks

2009-05-22T14:50:00.008-05:00

... and counting! As the contractions continue their persistent attempt to annoy, we are even more thankful for each day that passes.

This weeks' OB appointment brought encouraging news. After 2+ weeks of feeling like I have been in early labor it was reassuring to be checked and told that things seem normal for someone with a cerclage in place. Although she didn't measure exact length with an ultrasound this time she said it felt ok. The thing to worry about is cervical tearing from contractions (b/c of the cerclage), and the sign would be bleeding... which I've had none of so far!!

I think I've gotten the hang of working with the medications and knowing when it is worth the yucky side effects to take them. They definitely do slow the contractions significantly. I know our doc will tell me to stop taking the meds some time soon. After a certain gestation the pills don't work, and also it won't be necessary to stop labor if it comes. I'm guessing about 35 wks.

What is in a name?

Apparently for us, a lot! We can't seem to decide on the perfect name for our little peanut. There are a few favs floating around our conversations, but nothing seems to stick. We've been praying that the Lord would give us the name for this special child. Maybe we will just have to wait to meet him face to face before we know what fits.

This is just a funny video I caught last night after daddy got home from work. It's mostly for family who like silly videos of our kids.

(stop blog music at bottom of page first)

32 weeks

2009-05-14T12:48:00.003-05:00

This week has been a little difficult. While we are celebrating reaching the 32 wk mark, we are battling pre-term labor. Over the last several weeks my contractions have grown stronger and more frequent. As I've mentioned before I'm popping pills daily to try to keep them to a minimum.

Although I don't sit and time them very often, they seem to be coming about 5-15 min apart constantly. The meds do slow them down and help make me feel more comfortable... except for the nasty side effects. One of them causes my stomach to become very upset and I have trouble keeping down meals. (for those who know me well, know that vomiting is one of my most hated enemies!)

The contractions keep me pretty uncomfortable most of the time. There have been days that we weren't sure how much longer our baby will stay put. Of course we are praying for at least 4 more weeks, but really we are hoping to make it to Connie's wedding (June 20)! That is what we pray for every night.

The body is a funny thing, especially when it comes to labor. So, who knows, I could feel like I'm in labor for weeks and have nothing really change. Or, we could have another preemie. I go to the doctor again this coming Monday and I'm hoping she will check things out so I can put my mind at ease during the rough days.

Thanks to those who are praying!!

Abby is having a hard week also. The low grade fevers still come and go. Today she feels yucky and just finished her 6th seizure. So far her temp is 100.4 after Tylenol. No other symptoms. No signs of flu. If this keeps up over the weekend I suppose we will have to take her in to see the pedi. For now we are just watching the fever closely and trying to keep her comfortable and happy... which can be a big challenge!

31 weeks

2009-05-09T16:14:00.006-05:00

(profile)

I got another little glimpse of our tiny baby yesterday, but he's not so tiny anymore! They were checking his growth and the status of the previous bleed. There was no sign of bleeding!! It has completely resolved.

(nose/lips- rest of his face is in the dark)

The baby measured one week ahead and looks great! He's grown so much since our last scan. She estimates he weighs about 4 lbs!! It feels so great to finally be in this weight range.

(little foot)

It seems that from now on I will be spending most days managing preterm contractions. I'm taking 2 different medications as needed. Some days I take it on a schedule, but have found that the side effects can be pretty uncomfortable. Our doctor says that we have done and are doing everything possible to keep preterm labor from happening. She reassured us that as long as there are no "baby house" changes there is nothing more we can do but wait.

On a different note, Abby has had some difficult days lately. She is on her second week of Banzel and we aren't certain how it has affected her. She has been more 'out of it' and Much more fussy! She seems to be also having tummy/intestinal troubles that we try to manage... adjusting her dose and frequency of miralax and tweaking her feeding pump rate as needed. It's really a frustrating guessing game with some days leaving us all drained from her moaning, finger biting and overall unhappiness.

She continues to have multiple daily seizures which do cause lots of irritability, but we are hopeful the new medication combination will start helping this soon.

If only we knew for sure what was wrong and how to fix it. This daily challenge continues to push me to my knees, knowing that our Heavenly Father truly is the only One who knows and can rescue.

Abby also continues to have on/off low grade fevers (100-101+). She is not exhibiting any other signs of illness other than an occasional runny nose. For now we are just keeping an eye on it as this isn't new for Abby. Last Spring we experienced the same pattern with no answers.

Family Weekend

2009-04-30T16:58:00.029-05:00

Our weekend in pictures. We had so much fun in TN with our family!

Josiah's first fishing trip!

Cousins at the playground, soaking up some rays...

Norah ("Rosie")

Anna

Baby Jack

Baby Jack's adorable foot!!

Our growing family!

#1. Abby struggling to sit...

#2. Working harder...

#3. Sitting tall!

Neurology results

2009-04-24T14:03:00.006-05:00

This morning we all went to visit Abby's neurologist for our appointment to discuss her ambulatory EEG results. It was a good visit with plenty of time to talk about all the details surrounding Abby's seizures.

A quick rundown of what we discussed:

- Yes, the new 'hair pulling, rapid breathing' behavior we have seen are seizure events

- Yes, every time we pressed the button while she wore the electrodes there was a seizure event happening

- Abby's brain activity during a generalized seizure (tonic clonic) is not what is typically found (epileptic spiking); instead her brain goes into "runs" of very rapid firing. This difference is related to her individual brain damage related to the grade IV brain bleed.

- Abby has short periods of epileptic spiking even when there is no clinical evidence of a seizure; she said this is nothing to worry about, it's like having an extra heart beat every now and then. She's more concerned about the seizure activity with clinical signs.

- There is asymmetry in the brain activity between the left and right hemispheres. Some slowing on the right side. She said this probably means most of her seizure activity is triggered by the right, temporal/occipital lobe area.

- Yes, Keppra makes people cranky. Abby is on a pretty hefty dose, so it is very possible her sleepless nights and hours of fussing could be related to her medication increase.

- Yes, we can discontinue the Lamictal.

-Yes, we will need to try a new medication. It's called Banzel and is new on the market. She has several patients on it right now who have gotten very positive results.

The plan is to try the Banzel and slowly titrate up the dose for the next 6 weeks. We will keep close track of Abby's seizure activity during this time and meet again June 16. At that time Abby will have another ambulatory EEG done for 48 hours to see if there is any change.

She also increased the VNS settings. It is programed for rapid cycling where the VNS fires on for 7 seconds and off for O.3 minutes. So, it goes off frequently for short spurts. I'm still trying to understand all the other numbers involved (mA, Hz etc.)

We are hoping to see some improvement with this new medication. Although we would prefer to have Abby on less meds, seizure control is very important. The doctor explained that it is like trying to find the right "recipe" for Abby. Being on three medications that compliment each other and decrease seizure activity is better than being on less with poor control. That made sense to me.

The next 6 weeks will be another test of sorts. Some of the side effects from Banzel are loss of appetite and trouble sleeping.

We are praying that Abby's sleep will not be interrupted and that her body will adjust quickly to this new cocktail.

Abby details and 29 weeks

2009-04-21T13:55:00.004-05:00

This week we turn 29!! Gestation that is.

Hopefully only 6 more p-17 shots, one more growth ultrasound and 11 more weeks to go. Of course we are shooting for 40 weeks, but we would be thrilled with anything past 36!

I had a doctor's appointment yesterday where we discussed my contractions and such. She checked the "baby house" with ultrasound and found all to be as it was before. whew! We just never know. For most, contractions at this point can be totally benign and expected... but we know all too well that it can also mean a silent disaster around the corner. This makes us all the more thankful for a watchful doctor who is willing to look into our concerns.

At 29 weeks all is well!

Our house is also slowly on the mend from the most recent cold. Abby is still very congested, but fortunately has avoided any pneumonia from developing. Her tummy has had lots of problems, but hopefully today we will see improvement. I am starting to feel better too.

This Friday we will be meeting with Abby's neurologist to go over her EEG results. They called a few days ago to tell us to increase her Keppra dose. I'm not sure if this is coming from blood levels, the way her EEG looks or her most recent Big seizure. We shall see. It will be helpful to know more details about what her brain is doing during seizure events, but also with the different behavioral changes we've noticed. I'm not sure if Abby's treatment plan will change much, but we are hoping to Not have to add another medication.

Last week we took a trip to Birmingham to see the glaucoma specialist. Her eye measured exactly the same as it did 4 months ago, around 24. He said he could live with those numbers.

She was such a brave girl as he poked her eye numerous times to get multiple readings. I think she knows when it is time to be brave, because in the waiting room it was a different story!! She was definitely upset and anticipating that something uncomfortable was about to happen.

We will continue with the same two drops and will see him again in 6 months.

As part of a requested evaluation for Abby through our school system, a teacher for the visually impaired (TVI) came for an assessment last week. It turned out to be very helpful! Some of these evals are just more of the same question and answer sessions with no new information for us. This guy actually gave us some suggestions on pre-braille activities and things to work on toward better communication. So, that was encouraging.

28 weeks

2009-04-15T18:47:00.007-05:00

Our new baby now has his eyes open and weighs over 2 lbs! We are still thinking about names. Now that he is getting to a safer gestation it's more fun to explore names. There are a few we both like but haven't settled on one yet.

This is about how we are all feeling this week.

Josiah started the sickness this week, and Abby followed by stressing us out with her big seizure. Now we all have this nasty cold and are feeling lousy.

Abby has been pretty out of it since Monday's excitement. Diastat always affects her for several days... she feels like a rag doll and is not very alert. The fever plus the other symptoms just really wipe her out. Her tummy has been pretty upset too, so we turned down her pump rate to keep her comfortable but hydrated.

Her fever is down today which makes us happy.

Here are a few pictures of the kids on Easter Sunday.

ER

2009-04-13T16:39:00.005-05:00

After 6 months of ER avoidance, we made an unexpected trip there this morning. Abby spiked a 103+ temp early this morning.

She woke up a little before 6 am. As soon as I saw her I knew she was Sick. Within minutes she quickly went into a status (prolonged) seizure. After some very fast Tylenol and Diastat we loaded up and headed to the hospital.

The seizure stopped while en-route, but she was struggling to breathe. A nurse met us at the door and quickly got her hooked up to monitors etc. They did all the usual blood draw for labs, IV fluids, O2, chest x-ray, head CT and more. She needed oxygen for about 2+ hours and got a breathing treatment which helped.

All of her tests came back ok. Her WBC were a little elevated so she got a dose of Rocephin.

Once she held her O2 sats ok on her own without O2 we got to take her home. She has been very lethargic and sleepy all day. Her fever is better controlled with meds and hopefully we can just ride this virus out over the next few days.

Josiah has been a little sick too.

This will be a week of more down time now that we can cancel our many appointments. Not such a bad thing every now and then.

New Tube

2009-04-08T17:02:00.003-05:00

(Yesterday)

Abby's GJ-tube replacement procedure went very smoothly! They fit us in this afternoon, even if they were an hour behind schedule. We were just thankful to get it done today. Abby seemed uncomfortable last night with the slow drip into her stomach.

They didn't do IV sedation this time which surprised us... the last two procedures they did. The doctor came to get her himself and carried her to the procedure room. He was so sweet to Abby. He said she probably wouldn't need deep sedation. It took about 20 minutes. They must have given her something through her tube to relax her or something b/c she came back a little groggy, and he mentioned that she slept through the most uncomfortable part.

She was SO hungry by 2 pm when they finally took her back, after not having anything all morning. While we waited, Patrick distracted her by tickling. That was the only thing that helped her stop moaning, even if for just a minute.

Baby Hunter will probably be having surgery soon. Please continue to pray for him and his family.

Another new tube

2009-04-07T20:58:00.008-05:00

Abby's weekend (ambulatory) EEG is over and it was able to capture at least 6 tonic clonic seizures and other questionable behavior. The doctor should have plenty of data to examine and hopefully we will hear soon what we are dealing with. Abby seemed rather unhappy most of the weekend and of course tired from all the seizures.

(Finally happy snuggling with Connie after an hour of fussing in bed)

(Wearing Josiah's batman cap to help keep the wrap on her head)

(Scrubbing the stinky glue out of her hair... she gave some cute smiles)

We enjoyed some fun time with Aunt Connie and (soon to be) Uncle Matt! The kids loved lots of cuddle time and plenty of extra attention. Thanks for coming to visit guys! Can't wait for the wedding!

Well, today we had some unexpected excitement. Abby's J port came out some time during our transit from UCP therapy and home. We found her soaked with milk once we got home... she tried to tell us, but of course we were clueless.

This has happened a few times in the last 6 months and we have been able to "pop" it back into place. (the tube itself is still in place) Not this time. It is broken. The rest of the afternoon we continued to soak up drainage coming from the open port while we waited several hours for the nurse to call us back. Finally she called to tell us that she wasn't able to make an appointment yet to have the GJ button replaced.

Because it was leaking so much we had to take out the entire tube and replace it with a temporary G-tube. It went fairly smoothly although uncomfortable for Abby. I always have a moment of inner panic/turmoil during these events, worrying that something might go wrong and cause more pain for my little girl. Thankfully she is now being fed VERY slowly into her stomach to prevent reflux and dehydration while we wait for a replacement.

It's been over 1.5 years since we have fed her into her stomach (G port)... she isn't used to it. The nurse should be calling tomorrow to let us know when her replacement procedure is scheduled. She will be put to sleep again and won't remember the event. The IV stick is the worst part for Abby.

Please pray for baby Hunter. Patrick's cousin and best friend Bill and his wife Shannon just had a beautiful baby boy 3 weeks ago. He is having tummy problems and might need surgery soon. Pray for wisdom for parents and docs, as well as a smooth procedure if it is required.

Our gauze baby

2009-04-03T16:24:00.008-05:00

Abby had her EEG put on today. She did great except for some loud yelling when I had to hold her head still.

The tech wrapped her head in gauze, but not tightly enough! Argh! Now we are home and she is doing her usual head rubbing against the cough and the gauze has come loose and is slipping off. I've tried to fix it with an ace bandage and more gauze but to no avail. Patrick is coming home soon to help me re-wrap our darling's little head.

You'd be amazed at how quick and sneaky those little hands are! I'll be surprised if these wires stay in place for the next 2 days.

She looks pretty funny right now with a large tuft of hair and colorful wires sprouting out the top of her head wrap.

Her blood levels for Keppra and Zonagran came back... the Keppra level was appropriate, but the Zonagran was a little low. The doctor wants to wait for the EEG results before making any medication adjustments.

Praying that this test will reveal Abby's true seizure activity and will give us a better interpretation into her behavior.

Looking forward to a fun weekend with Aunt Connie & (soon to be) Uncle Matt!

(tuckered out from this mornings excitement)

26 Weeks

2009-04-02T13:02:00.011-05:00

Now we are in the 26th week. It's pretty exciting getting closer and closer to "safety". I'm sure we probably seem overly obsessed with our pregnancy progress, but anyone who has had a preemie would understand. Every day can make all the difference!

I can't believe it's April! Yippeee!

Over the past several weeks we've been working with one of Abby's PT's (physical therapist) to get her fitted for a new gait trainer. We finally settled on the Kid Walk model and actually filled out the order form this week! Hopefully it will show up anywhere from 6-8 weeks.

She seemed to do pretty well in it during our practice sessions. It has some neat features such as bouncing action, hip sway side to side during walking, and large wheels for the child to push themselves. She obviously can't propel herself yet using the wheels, but she does put her hands on them and shows interest.

(Josiah playing with Gigai at UCP during therapy)

Tomorrow we go back to the neurologist to have another ambulatory EEG placed. Abby will wear the wires all weekend to record seizure activity. Hopefully it will pick up what we have been seeing lately. Abby has done better this week and has had fewer seizures. Although this sounds weird, I hope she has those strange seizures during the test so the doctor can give us some answers and we can form a good treatment plan.

Happy Birthday Josiah!!

2009-03-30T22:00:00.005-05:00

We have a three year old!

This year Josiah has...

Chosen Veggie Tales as his favorite movie

Psalty and Andrew Peterson as his favorite music (esp "Matthew Begats")

Learned to swim

Potty trained!!

Loves to help Daddy tinker in the garage

Says he wants to be an astronaut

Perfected special "chores" to help Abby... bringing cans of milk, getting her toys

Graduated to a Big Boy bed

Prays that Abby will learn to walk and see

Funny things he says...

"Blanklet" (Blanket)

"ipop" (ipod), "puter" (computer), "Mary and Jofus" (Mary and Joseph)

"Hey dad, are you in the know?"

"Mommy, is your hair brown like my poopy?"

When put in time out will cry and say "mommy, will you pray for me?"

While sitting on the potty asks "Will you tell me a story?"... to stall

Asks select people if they have a baby in their tummy like mommy

Prefers "clean" cow to "dirty" cow for snuggling. (clean cow is much dirtier!)

Named his rocking horse "paco".

Josiah's Birthday Movie

(pause blog music @ bottom of page first)

25 Weeks, and more seizures

2009-03-25T14:00:00.005-05:00

We've made it to 25 weeks! I am so thrilled. Our baby's eyes might start opening by the end of this week. Abby's eyes were fused shut when she was born and didn't open for a while.

I remember a 25 weeker born soon after Abby who "lived" across the aisle from Abby. She was breathing all on her own and was throwing the biggest and tiniest screaming fit I had ever seen in her isolette. Her eyes were wide open. It was almost unbelievable that a baby so small (probably under 2 lbs) could be so feisty and healthy.

(For those who have given birth to a 25 wkr, I am by no means saying that all 25 wkr's are this fortunate. I just like to remember that baby during this time of my pregnancy, encouraged by the gestational mark we have achieved!)

I saw that baby again after Abby was discharged from the NICU and attending a therapy program in Knoxville for ex-preemies. She was very healthy looking, just tiny.

Abby definitely seems to be having new seizure activity. I spoke with the neurologist's nurse today about what we have been seeing. The doctor has ordered blood tests to check her Keppra and Zonegran levels. We asked for another EEG but I'm not sure that will happen any time soon. Hopefully we can get the labs drawn without too much drama this afternoon.

For those interested, the new seizures she is having are Absence seizures and probably Complex Partial seizures. She has had Absence seizures before, but they have become more frequent lately. When she has these it's like she is in a daze, "staring" off to the left and unable to respond to us for 10-20 seconds.

The new seizure activity manifests itself through "automatisms" and rapid breathing. (automatism: unconscious and repetitive movements). For Abby, it looks like she is gently bringing her hair over her face on the left side, over and over again while turning her head from side to side. She also seems agitated during and after the seizure. They only last about 15 seconds and are sometimes hard to recognize.

We think because she is having more seizures daily that her behavior is being affected. She has been more "out of it" than usual, not cooperating during therapy or activities and just wanting to be left alone. She's also been sleeping more than normal, and is often agitated when she is awake.

We are really hoping that we won't have to go back up on the Lamictal again. But, of course we want what is best for our little sweetie, even if it means more drugs. With Abby it's been very difficult to find that delicate balance b/w seizure management/drugs and healthy development.

The drugs probably keep her out of the hospital, but they also have side effects which contribute to all sorts of set backs.

I'm watching her now as she sleeps off one of her tonic clonic seizures. It really breaks our hearts.

Our piece of Earth

2009-03-23T18:07:00.004-05:00

(If you look past some trees you can make out some of the view)

Today we are officially land owners!

Patrick has always dreamed of having a "farm". Some dear friends of ours live on a mountain nearby and have some beautiful property over looking the valley.

We bought a 20 acre piece near them on the mountain and are really looking forward to spending time up there enjoying nature and the gorgeous view together! It's still rugged enough that we can't easily take the kids near the bluff for a picnic yet. Soon we hope to clear some of it and put in a gravel road so that we can go as a family for some out door relaxation.

Celebrations at home tonight with grilled cheeses!

24 weeks

2009-03-18T21:08:00.002-05:00

We made it.

It was a gorgeous day, and Patrick stayed home to work on our garage. He prepped and painted the floor with a special paint so it looks super neat and clean! (Thanks for your help Adam!)

The kids and I stayed outside with him for the majority of the day, enjoying the sunshine and helping as much as we could. Josiah loves to "help" Daddy outside. He brings his tools and tinkers on things. It is really cute.

Abby liked the breeze and sun too for a while. She has had a rough couple of weeks lately with new seizure activity and almost weekly low grade fevers. Not sure what the fevers are from, there aren't any other symptoms accept for a slight runny nose occasionally. She definitely acts like she feels crummy when the fevers come, as well as suffering extra seizures. We are 5 mg away from eliminating one of her seizure meds (Lamictal). Because of her seizures lately we are waiting to see some improvement before making any more changes.

Hope you all enjoyed this beautiful day!

Special visitor

2009-03-17T13:44:00.010-05:00

A few weeks ago Pipai (Patty's Dad, Bill) came for a visit! He brought his cool car too... even in the freezing weather. Josiah got to have a special ride in the cobra.

Dad was working on building this car with Patrick during Abby's 6 month NICU stay, 5 years ago. It was a great stress reliever for Patrick and now holds some fun memories.

23 weeks 4 days

2009-03-15T14:51:00.004-05:00

This is a significant day for us. Abby was born at this gestational age. We know exactly what this new little boy looks like today, and are overwhelmed with thankfulness that he is safe.

Thank you Lord!

I think this means we can officially start celebrating each week that passes! Time to find some restaurant coupons.

Abby- 23 wk 4 d

"My soul waits with longing for the Lord, and in His word I put my hope."

Psalm 130:5

Pi (3.14159) Day and big kid beds

2009-03-14T18:33:00.011-05:00

Our delicious apple pie to celebrate Pi Day!

Out with the cribs and in with the big beds! Josiah and Abby are in the trundle Patrick slept in as a child. They both have fun new bedding too.

Abby isn't feeling well today so J decided to try her bed out.

23 Weeks

2009-03-12T19:58:00.004-05:00

We have entered our 23rd week of pregnancy.

It's a week we've been anticipating, dreading and celebrating. Glad to have made it this far and yet feeling as though we are holding our breath for this week to pass without incident.

I find myself painfully aware of each day our new baby is developing, but also trying to put the worry out of my mind. The Lord has graciously given our baby good health and he continues to grow and thrive.

It's difficult to not dwell on past memories of Abby's early NICU days, remembering what she looked like, smelled like and how fragile her little life was at this stage of development. What perfect features, soft dark hair, and delicate eye lashes she had. How much I wanted to put her back; back where she was safe and protected.

Watching Josiah gives us hope. I remember celebrating our 24th, 25th, 26th weeks and beyond with him, consumed by the joy that each week brought us closer to having a healthy baby... Knowing exactly what babies look like at each stage, and hoping to never see a micro preemie again.

Now that we are at this critical point in our pregnancy I am very aware of every discomfort and contraction. At my OB appointment this past Monday my doctor did some ultrasounds and reassured me that the contractions I have been feeling were not changing anything, and that the bleeding she saw before has clotted off and looks improved! The baby has gotten bigger since our last scan and was very active!

She gave me some Procardia to take when I have contractions. It makes me feel very light headed and "head-achy"... but it works. Now we just need to be extra mindful of preterm labor signs.

Thank you to those who have been and still are praying for us. We covet them, especially this week as we look forward to making the 24 week mark.

Snow Day

2009-03-04T16:25:00.006-06:00

A Day at Children's

2009-02-25T15:18:00.007-06:00

Yesterday we took Abby to Children's hospital in Birmingham for her yearly Neurosurgery check up. Because she has been stable as far as her shunt goes for the past year she did not need a CT scan. This turned out to be good, although we went 2 hours early b/c they had told us to come for the scan before her scheduled appointment.

It turned out we had plenty of time to eat lunch in a very crowded cafeteria and not feel rushed to make our appointment on time. Eating has become very important for this pregnant momma. It's been such a struggle for so long I've almost forgotten how to look forward to and enjoy a good meal. It's slowly coming back

The doctor saw us and asked a bunch of questions about how she is doing over all, and how our family is dealing with her various health/developmental issues. He was very nice and said that since she has not needed a shunt revision since her first VP shunt was placed in the NICU it would probably be safe to come back in 2 years! He reminded me of the warning signs of a major problem, but said he feels like her shunt must be working fine. (it's either working fine despite being disconnected, or she doesn't need the shunt anymore!)

Mom made this trip so much more fun than it usually is! Taking Josiah on wagon rides all over the hospital and keeping him occupied so Abby and I could actually "talk" to the doctor! It's always nice to have someone to talk to on car trips too.

I tried to take a picture but my camera battery died and I was only able to get one sad little picture with my phone, that also promptly shut down on me after the picture.

One of the things the doctor had asked was how our son was coping with Abby's needs and how he fits in the family. I thought this was an interesting question. We have noticed that with the passage of time Josiah has become very sensitive to Abby and to our emotional responses to life... especially illness. I shared this with the doc and he said that in most families with special needs children, the siblings do tend to become very compassionate and mature.

Patrick had a tooth that was bothering him the other day, and Josiah quickly picked up on it. He asked Patrick if he could pray for him.

"Dear Lord, Daddy's feeling sick. Please help him to feel better. Amen."

The next day after Patrick had been to the dentist Josiah had not forgotten about the tooth and asked how he was feeling. He seemed happy to hear that Daddy's tooth felt better and that nothing was wrong with it! It was a fun moment.

He has also occasionally scolded me for getting up to help him with something, saying:

"No mommy, you don't get up. You're sick, you have a baby in your tummy!!" I know he has been affected by the many weeks of my nausea/vomiting in addition to the bed rest. Poor kid, he must be confused.

Just wanted to share our good news about Abby's hydrocephalus. We are thrilled!

Problem Revealed

2009-02-17T16:50:00.005-06:00

We went for our level II ultrasound at the UAB high risk clinic yesterday. It was nice they got us in so quickly!

The u/s technician thoroughly scanned the baby and measured lots of different things... parts of his brain, details of his heart, kidneys, bladder, spine and more. She spotted the bleed and told us where it was. Then she got the perinatologist to come talk with us.

The peri did her own full scan of the baby, placenta and then the bleed. She confirmed that the bleed is a Subchorionic Hemorrhage. We got to see more clearly where the bleed is and how big it is. She said it starts at the placenta and goes almost all the way around the baby's amniotic sac. The sac has separated from the uterine wall where we could see the blood sitting behind it. She said the placenta is still intact and connected to the uterus... a very good sign.

The bleeding could have come from the placenta or possibly from when the sac separated from the wall. Most likely the blood will reabsorb and not cause any further problems. She also said the bleeding I had 1 week after my cerclage was not related to the procedure.

The bleeding does put us at higher risk for miscarriage and preterm labor. Best case no more bleeding will happen. She said we will just need to be more cautious about signs of preterm labor... which we already are. She recommends follow up ultrasounds monthly to check the bleeding and see if it is being reabsorbed, but also to monitor the growth of the baby.

So this week things are good! We are 20 weeks today.

Papa and Grandma are here, playing pirates with Josiah! They brought some fun foam swords with which he loves to "fight" with! It's fun to watch the three of them.

Thank you to all who are praying for us and for this baby! We are really thankful to be this far along.

Oh BOY... Half Way There!

2009-02-13T20:33:00.011-06:00

19 Weeks

(Face and chest... look close, you can see left eye lid & lips)

Today was our BIG ultrasound! We've been looking forward to getting a longer look at our new little one.

Our doctor made it a fun visit, although she was about 2 hours late. It turned out ok since Aunt Carolyn was here to play with the kids, and Patrick was with me. (Thanks Carolyn, what a big help that was!!) We left to eat lunch together and returned for the scan.

After my 'trial' week of increased activity the doctor measured the cervix again and said it looked great! I can continue moderate activity being careful to not "over do it".

(Face/chest and both arms up by face... waving!)

The baby looked good. All of his measurements were right on target! He was moving a lot and we saw him waving his arms/hands near his face several times. He even touched his hands together. She focused on his face for us so we could watch him open and close his mouth... probably swallowing fluid or practicing his breathing.

(Close up of face/abdomen. Hands up by face)

He's definitely a boy! She got several clear shots. We are excited to enjoy another son! Abby remains our Princess.

The doctor did find a blood clot on/near the placenta. She called it a Subchorionic Hematoma. There was no active blood flow to it, which she said was a good sign. It's possible this is the reason for the bleeding several weeks ago. Although most of these types of bleeds reabsorb on their own and don't cause further problems, it depends on the size of the clot and some other factors. She is sending us to UAB in Birmingham for a Level II ultrasound. A perinatologist will review this more detailed scan to give us a better understanding about the bleed.

Hopefully it will turn out to be nothing more than something to be monitored periodically.

I told Abby and Josiah they were going to have a little brother. J smiled big, looked at some of the pictures and said he "liked that." Then he told me he liked the name 'Jonah.' We haven't really thought about names much lately, but I suppose now would be a good time to start.

(Ankles crossed/ abdomen and cord insertion... future belly button)

I'm thankful to be having more good parts to my days. The nausea still hits hard sometimes, but it's much more bearable with good moments in between! Thank you Lord!!

I think we are finally entering the Fun part of pregnancy.

Good news

2009-02-10T14:21:00.004-06:00

(silly pig tales!)

Yesterday was my first cervical ultrasound measurement, and it went great! The doctor said everything looks perfect, the stitch is in good position and everything is closed! That is exactly what I wanted to hear.

I even got a quick glimpse of the baby's head, ear and hand waving about. So fun! She told me I could get up and slowly increase my activity. I go in for our Big (fetal survey) ultrasound on Friday when she will check the cervical length again to see how it performs under more pressure.

We are looking forward to this ultrasound. It should tell us if this baby really is a boy or not! She will also examine the baby more closely to check for problems... but hopefully all she will find is extreme cuteness!!

This last week has been tough. I got pretty sick with a sinus infection that migrated to my chest and a sore throat that hurt like strep. I don't remember the last time I felt that terrible. I got a Rocephin shot and some Augmentin to take for the next 2 weeks. This has bumped up my nausea quite a bit but I'm trying to just plunge through it to get rid of this crud. yuck.

Mom has continued to be our life saver. She has also become an expert at organizing our pantry, diaper changing, temperature taking, laundry folding and therapy follow through! Even though Abby is (literally) almost as long as mom is, she is still able to get her in and out of our van. It's no small feat when you've got the feeding tube attached and orthotics on, believe me. As much as we appreciate her help, we've enjoyed her company just as much.

(Abby during speech therapy)

Hopefully we will have some better pictures of the new addition Friday after our appointment!

More of the same

2009-01-30T21:03:00.012-06:00

Monday's doctor appointment went fine, just more orders for continued bed rest. Our next appointment will include the first cervical length measurement. This will hopefully set me free from my present confinement.

Unlike many recent comments, bed rest is not fun or relaxing in the traditional sense of the word. Not for the body or for the mind. In the past three weeks my muscles have started wasting and I get dizzy from just standing. My hips are sore and I perpetually look like I've forgotten how to dress myself. Many other discomforts plague me that I will spare you from.

I don't mean to complain. I would have Gladly and most thankfully done this for Abby before she was born if I could have. This is continually at the fore front of my mind when I feel tired of the process. I suppose this venue is a safe place to vent the reality of pregnancy after a preemie.

We have been overwhelmed by our family and friends who have jumped in to help! Thank you Grandma and Papa! Thank you Mom, for coming all the way from China to "work" in our house. Thank you friends for meals, flowers, cards and encouragement. It keeps us going.

I find myself going to look at pictures like these, reminding me of all the secret joys a full term baby brings.

And the miracles of a micro-preemie...

Bed Rest Continued...

2009-01-22T16:24:00.016-06:00

(15 weeks- face, feet, hands)

This past week has been more involved than we had expected.

I meant to update the blog and just didn't get to it until today. (Warning: long and personal post)

It all started last Thursday night. After being a "good girl" for 4 full days after the cerclage procedure (1-9-09), and staying on the couch except for bathroom trips, we felt like everything looked good. Even our doc was encouraged when she checked on Monday (last). So we went back to life as normal for the most part. I took Abby to therapy but tried to minimize lifting at home. Patrick and I went out to dinner Wed. night for our date and did a little shopping.

Turned out a little lifting and shopping was too much. Thursday night I just felt bad. I couldn't pin down what exactly wasn't feeling good, but I figured I feel bad most days anyway and the nausea is usually to blame. Went to bed early after having a little spotting. The next morning there was enough bleeding for me to be worried. We called the doc who told us to go to L&D to get checked out.

(15 weeks- profile; hand touching face)

Baby's heart rate sounded good. But the bleeding got worse. The doc checked things to make sure my water wasn't broken, and that the bleeding was from the cerclage site. It was, so she admitted me for 24 hr complete bed rest. 'Complete' meaning: IV fluids, antibiotics, pain meds (for cramping), nausea meds, catheter, TED hose and pumps for my legs. It was less than pleasant. She said she wanted to make sure the inflammation/bleeding didn't cause my water to break or for labor to start. This made us really nervous.

(not an attractive shot, but part of the memory non the less)

She also did an ultrasound to check for the health of the baby, placenta placement etc. Everything looked ok. (She even thinks it's a boy!) We got a few pictures.

Saturday went ok with minimal bleeding. The first time I really sat up to eat, I knew I had made a mistake. The nurse checked and seemed concerned. She called the doc who then ordered for me to stay another night to give the surgical site more quiet healing time. So, I endured another night of minimal movement, eating/drinking on my side (not as easy as it looks) and some cramping. Patrick stayed with me and helped me, which made the little sleep I did get more peaceful.

Sunday was a good day. Very little bleeding and I slowly was freed from all the tubes, tape, wires and obnoxious pumping stockings! We were home before supper.

The doc had ordered for continued bed rest this week to make SURE the cerclage site was healed up and that no more problems would arise.

My wonderful sister came to our rescue Saturday night and kept our kids, cleaned our house, fixed us meals, made us laugh and just encouraged our socks off! Despite the unpleasant circumstances, the Lord always shows His compassion in the perfect way. He knew I needed my sis! She brought her 3 month old son Jack with her, and of course he was such a joy. It gave us a sweet reminder of what we are hoping to enjoy 5 months from now.

To top it off, she made us laugh till our sides hurt while I was trying to give my first P-17 (17 Alpha Hydroxyprogesterone) shot. It was quite a site!

Thanks Chris and Jack!! You'll never know how much you saved us!

Now Grandma is here from TN to save the day... and just in time too. Early this morning the bleeding started up again. After having several good days of hopeful healing, this was a big surprise. Plus the fact that I've been on my back, except for bathroom breaks. It was still dark out so I thought I'd give it some time before calling the doc. At around 7 am it was worse and the cramping was back, so I called. They told us to go to L&D at the hospital again. My heart really sank. I didn't want another experience like last weekend!

Fortunately things calmed down and the baby sounded great. We bonded with our nurse who ended up praying with us while holding our hands. The Lord touched us through her. I got two sticks and an IV but didn't keep it long. I only had a little bleeding while we were there so we got to go home around lunch time.

So, as you can imagine I'm BACK IN BED. Not on the couch, but in bed. The kids are both sick. Abby has a fever and runny nose. Josiah has green gunk coming out of his eyes, and a runny nose. Thank goodness for loving family!! (we miss you Papa)

My mom is coming back from China on Monday. She just went back after a long visit here in the States, but is turning around to help us. We will certainly need it.

Thanks to all the friends who have brought meals, come for a visit and prayed for our baby during this crazy time. I'm enjoying some beautiful flowers too!

We are so blessed.

Deafblindness

2009-01-15T14:22:00.003-06:00

For some this word has very little meaning. For others, it has changed the course of their lives.

Everyday as we try to reach Abby in her little world, it's difficult not to get discouraged at the vast amount of "life" experiences that we aren't able to share with her.

In our time of waiting for an evaluation at Perkins School for the Blind, it is encouraging to see others who share in the same struggle.

A little over a year ago I heard about the Deafblind triplets who live in Texas. Their parents have started a Deafblind Children's Fund to raise money for Interveners to help children like Abby learn to explore their world and to communicate. The Dunn's have had an Intervener working with one of their girls for over a year now. Zoe is learning new concepts and expanding her language every day.

Abby is on the Fund's current waiting list for an Intervener. These special people are trained to work with DB children, but sadly there are very few of them since this disability is rare.

I found this recent video of the Dunn family and thought I would share it. These girls are amazing!

The Dunn Triplest are featured in a DVD called "Through Your Eyes." All proceeds go towards the DBC Fund. (click link to see movie trailer)

If you haven't heard of the Dunn Triplets, here is a video of their story.

A Day of Rest

2009-01-10T13:08:00.006-06:00

(getting started)

I'm lying on the couch in the quiet, thinking of how thankful I am. Thankful that yesterday's procedure went well. Thankful that it's over and now I can concentrate on growing a baby. Thankful for a husband who walks this road with me and takes care of me. Thankful for Grandparents willing to keep our munchkins for the Whole weekend so I can really rest.

For the most part things went very smoothly yesterday. My spinal didn't quite take enough effect so they put me to sleep instead. Honestly, I was so glad. Although the whole thing took less than 20 minutes, it's not a fun experience to remember. Instead I had the best sleep I've had in 5 years!! It might have only been 15 minutes but I woke up feeling so rested!!

My doctor thought I was crazy for saying this... she just doesn't know how true it is.

I had two doctors in there to perform the procedure... made me feel pretty special! When it was over she told me she was glad they did it now. She said my cervix is short. Not sure what that means at this point except that we don't want it to change!

I took Cow with me for the day. Mostly for Josiah's sake, he'll think it's fun to see cow on the blog! Cow does have sentimental value for me as well. He's been near by for all of the most stressful events in my life. This is actually the real cow's twin... J has the real one in TN.

I go to the office for ultrasounds every 2 weeks for the rest of the pregnancy. She told us it could be every week depending on how things go.

We are optimistic and excited to carry this new baby to term. That is our prayer. If we can make it to June that will be excellent!! Our due date is July 5th.

(recovery)

None of this has felt real (except the nausea/vomiting) until now.

Patrick and I will continue to enjoy our little vacation together, feeling like newlyweds in our very quiet house. We miss our children a lot and look forward to getting them back on Monday. They are having too much fun to miss us.

A New Year Has Begun...

2009-01-08T12:07:00.005-06:00

This year we welcomed the new year with Patrick getting the stomach virus. It was a bad one too! Poor guy. The kids and I stayed far away from him as much as possible in hopes of avoiding the germs.

Although our anniversary came and went without much excitement we are determined to celebrate as soon as we are ALL healthy.

This week started out with Josiah getting sick with the nasty virus. His stomach was mostly empty (thank goodness) when his symptoms started so we didn't have to do too much laundry. He did have a high fever for 2 days and felt pretty lousy. Even today he is complaining of his tummy hurting after he eats. Yuck!

We are really praying that Abby dodges this one... and me too.

The kids are off to Papa and Grandma's today for the Whole Weekend!! I know they will have a blast, but we will miss them. I've never been away from them this long.

My cerclage procedure is scheduled for 8 am tomorrow morning. Although my mind has tried to ignore the worries creeping up, I can't help but wonder how the next 6 months will go. The cerclage puts me at higher likely hood of having more contractions during the next several months, even though the plan is for it to keep everything (and everybody) where it should be.

The certain type of cerclage (Shirodkar) my doctor will put in is more involved than the one I had last time. It cannot be taken out in the office but will require another outpatient visit and spinal for pain control. Most likely she will remove it before the baby is delivered by c-section. It does have slightly higher risks. After discussing the pros and cons of both methods, she explained that she has seen the best results with this type.

So here we go...

Merry Christmas!

2008-12-31T22:53:00.020-06:00

A few pictures...

Our Family

Aunt Christy and baby Jack!

Grandparents

Aunt Connie and Future Uncle Matt!

Our Cutie!

Uncle Bill and Abby

Cousin Anna and Siah

Cousin Norah and Siah

Josiah at bat

Abby and Mommy

Josiah and Cousin Maddie

GiGai and Abby

various updates

2008-12-16T13:59:00.012-06:00

New Baby update:

These feet represent what our baby's feet look like at this point. (obviously not real picture of our baby)

I had my 11 week OB appointment yesterday and got to hear the baby's heart beat through a doppler for the first time.

Because my pregnancies are considered high risk I have had an ultrasound every 2 weeks so far and have gotten to see our baby grow! I was a little bummed I didn't get a new picture yesterday, but thought I'd post this "look-a-like" to give you an idea of where he/she is in development.

The baby's heart beat was strong and wonderful to hear.

The plan for this pregnancy is to continue bi-weekly check ups, most of which will include an ultrasound to make sure the "baby house" is functioning as it should.

We are scheduled to have my cerclage procedure done on January 9th. At this point I will be 14 weeks along. Although this procedure, like any other, does carry some risk we feel that the potential benefits for me out way those risks.

We had the option to skip the cerclage and just take a watch and see approach. After much thought and prayer neither of us are comfortable with this plan and would rather do everything possible to avoid a prematurity surprise. Looking at my pregnancy with Josiah and how well things went with the cerclage and p17 injections, we have opted to go the same route and take advantage of all the tricks available to keep this baby in as long as possible!

Our doctor has been very supportive and agrees with our plan. She doesn't anticipate that I will need to be on full best rest at any point during our journey, but she has recommended a "modified bed rest" approach. I will continue doing what I need to do to care for Abby and Josiah and nothing more. She said this includes taking Abby to therapy!

Of course at any point this plan could change, but we are praying for the Lord's mercy and strength as we take each day literally one moment at a time.

Because I have had two previous c-sections this baby will come out the same way. Although I am really disappointed that it has to be this way, I've come to terms with it and am actually looking forward to having my first c-section without having to go through an exhausting labor! I might even feel human when I meet this little one.

My nauseating fog still continues. Thankfully it is not as severe as my other two pregnancies. I am really looking forward to feeling whole again, instead of the horrible, green, fraction of myself that I see in the mirror. Zofran has kept me functioning (marginally), and Phenergan has whisked me off into a coma state for some sleepy relief as needed.

Soon enough I will be large and clear-headed.

Abby is doing well these days, staying busy with PT, OT, Speech, Feeding and Music therapies in addition to extra PT at UCP. The sessions on the treadmill have helped her make progress in several areas. We've noticed more rolling, more lunging forward when in a sitting position, more stepping action in the gait trainer and better range of motion overall! We are so thrilled.

Her therapist at UCP has been doing scar manipulation, or stretching/massaging her multiple abdominal scars. She says this will improve her range of motion and free up her tissues to stretch more easily. It is very interesting to watch.

(Abby's B-day 9/03/08)

Her seizures have stabalized again after a few strange days and nights of irritability and myoclonic seizures. We slowed her medication decrease schedule to allow more time for her to adjust. It seems to have helped.

(9/03/08)

The glaucoma issue is also stable for now. Her last eye pressure measurements were in the low 20's. The doc would like to see them decrease into the teens but said he could live with her measurements for a while. We don't see him again for a few months, but unfortunately he will no longer be coming to Huntsville for clinics... we will have to drive to Birmingham.

A few nights ago I was putting Josiah to bed and he asked me to tell him about the Christmas story again. As I was recapping what we had just read about baby Jesus, he stopped me and pointed to Abby. Then he said, "Jesus holds Abby like a little baby." With the sweetest little smile he signed "baby" and said, "Jesus holds me like a baby too, doesn't he momma."

I couldn't help the tears as I envisioned our powerful Savior holding my children in His arms, loving and protecting them. I remember that image as being the most comforting to think about when Abby was tiny and sick lying alone in the NICU. We couldn't hold her, but knowing God WAS brought peace and comfort to my heart. When that thought entered my mind it was the first moment of full surrender.

Abby and Josiah both bring these precious reminders to me daily.

Children truly are a blessing from the Lord!

Lamictal dosing

2008-12-05T16:10:00.006-06:00

This past year we have been really hopeful to start decreasing one of Abby's seizure medications (she's on 3), now that she has the VNS. We started slowly weaning her off of the Lamictal this past Spring. Then she started school in August and couldn't stay healthy.

During one of her long seizures our doctor told us to bump her dose back up.

Now that she is no longer in school and somewhat isolated from childhood germs we are trying to decrease her Lamictal again. The main concern of her neurologist is that this move could increase her risk of more prolonged seizures. From what we have experienced, Abby has terribly long seizures when she is feverish no matter what medication she is taking.

In light of this, we are anxious to clear her system at least a tiny bit from all the heavy medication she is on. The VNS is definitely working better then we had hoped. She no longer has myoclonic seizures and is having fewer tonic clonic (grand mal) seizures now that she is staying healthy.

Please pray with us during this change in medication. The past few days Abby has been starting to show signs that her body isn't liking the decrease. Last night she was up till past 11 pm tossing and acting agitated in her bed. We think she is having additional seizures that are harder to observe, as she occasionally calls out with an eery tone and looks a little scared.

We've decided to slow down the schedule of weaning this drug. Hopefully this will give her system more time to adjust.

Josiah is getting really good at following directions from his mom who is often out of commission on the couch. He has learned to help Abby sit up in her new "Bumbo" type chair. He gives her pats when she is upset, or if she is working hard at a task. I'm really proud of him.

He has also started to enjoy "laying on the couch" with mommy. I asked him last night if he would sing me a song while we snuggled. He thought for a minute and sang me "rock-a-bye baby," almost word for word. I didn't even know he knew that song. Then he jumped up and belted out "Rescue Me" from one of our Selah albums. (can you tell we love this group?) He knows almost all those words too. It was pretty cute. That moment created my biggest smile for the day.

Job side Family picture at the Younger's

Thankfulness

2008-12-02T15:11:00.004-06:00

Although Thanksgiving has officially merged into the Christmas season, I find myself heavily impacted by the reminder of all the things I am truly thankful for.

As a mother, memories of the past remain vivid and hopes for our future continue to grow. This year we have a new reason to rejoice! Some days I have to remind myself that in less than 7 months we will have a new little person to love, and seeing him or her will make all these weeks of "the stomach bug" worth while!

I am thankful:

For my family.

For my precious munchkins.

For a husband who is there when I need him!

For a sister who I can share my heart with.

For parents who love our Lord Jesus.

For our preemie experience that changed us forever.

For music that touches my soul.

For simple moments watching a sun set.

For quiet answers to my prayers.

Music has always had a unique way of reaching into my spirit and helping me see what the Lord has been trying to tell me.

I'd like to share the lyrics to a song that hit me this past week as we were driving and I was feeling especially sick.

(I found the song on YouTube so you can listen to it. I still haven't figured out how to post a single song on the blog for sharing... let me know if any of you knows how.)

Before the Throne of God Above

-Selah

Before the throne of God above

I have a strong and perfect plea.

A great high priest whose name is love,

Who ever lives and pleads for me.

My name is graven on His hands,

My name is written on His heart.

I know that while in heaven He stands,

No tongue can bid me thence depart.

When Satan tempts me to despair,

And tells me of the guilt within,

Upward I look and see Him there

Who made an end of all my sin.

Because the sinless savior died

My sinful soul is counted free.

For God the just is satisfied

To look on Him and pardon me.

Behold Him there the risen Lamb,

My perfect spotless righteousness,

The great unchangeable I AM,

King of glory and of grace,

One in Himself I cannot die.

My soul is purchased by His blood,

My life is hid with Christ on high,

With Christ my saviour and my God!

Coming Soon...Baby #3

2008-11-21T20:32:00.010-06:00

Our new baby is due on or before July 5th, 2009.

Abby and Josiah are excited, we think. Josiah likes to talk about the baby and kisses my tummy a few times a day.

We are about 2 months along, and looking forward to the weeks when I won't feel sick!

Because of my unexpected early labor and delivery with Abby there will be several interventions that will be part of this journey... much like my pregnancy with Josiah.

We are earnestly praying for a smooth pregnancy and Full Term Baby!!

Toddler quotes

2008-11-11T16:20:00.011-06:00

Experiencing the world with an inquisitive 2 year old is just fun! Josiah has started a new phase... or I should say, a new phrase.

"Why?"

Every comment is followed by a "why?". Why do I have to, why can't I, why won't you??? It's been pretty funny so far, but is really stretching our conversations to include many lengthy explanations. I can now see the reason parents reply with a "Because I said so."

The other day he looked at me with a sweet little grin and asked, "Mommy, are you married"? I told him that I was married to daddy! He then took my face in his hands and announced, "no mommy, you're married to ME"!

I didn't know whether to laugh at the funniness of his statement or cry from the sweetness. That was a true mommy moment that I will never take for granted.

Abby has started PT with our local UCP chapter in Huntsville and has been challenged to a treadmill race. It's actually only about a 0.5 mph stroll, but for her I'm sure it feels like she's climbed a mountain!

It's a very neat contraption that she gets hooked into. Our therapist is very capable and quick at getting her gear all connected. Then she sits behind Abby and guides/manipulates her legs to complete a full stride with each step. Patrick went with us today to observe and we both enjoyed getting to see Abby "standing" up straight and taking steps... even if it was with a lot of assistance. She really looked like a 5 year old.

It is surprising to see what a champ she is in this new set up, holding her head up the whole time. There is a little hair pulling and some moaning to protest, but for the most part I think it must feel good. Step by step the therapist can feel her legs loosening and can actually tell that Abby is making effort to move her legs by the end.

Abby has been healthy for these past several weeks being at home. I heard RSV is running rampant already in our area, so I'm relieved to have a better chance of dodging it this time.

Her seizures have improved too... of course mostly due to no illnesses! The last 3-4 weeks she has averaged about 2-5 in a WEEK! This is pretty good.

Although today she has had 11 so far. We are hoping this doesn't mean sickness is coming.

(scratch that. She has a low grade temp now, 100.1)

She has been having full afternoons of fussing, moaning, arching and full on tantrums lately too. It's difficult to describe, but it seems like it must be GI related. Since starting the J-feeds she has developed some different symptoms. Much like her reflux behavior, it seems to send her into intense moments (hours) of discomfort.

I could go into more detail about what this looks like, how we treat it and what seems to help... but not today.

I'm really trying to lay it all down at the foot of our Heavenly Father, who is the only One knowing Abby's struggles intimately.

We appreciate your prayers for Abby, especially with this issue. After this past year we feel 'tested out'. The GI doc seems to be done exploring reasons, so we seem stuck. But I know this is where the Lord works best in me. Stuck, discouraged, tired and without answers.

Waiting for Him to speak or move... or Both.

Home Bound

2008-10-28T15:03:00.008-05:00

We've started another new chapter to our family journey. Now that Abby is officially considered a "home bound" student, our schedule is about to change.

As we wait for our turn to see the Deafblind team at Perkins School for the Blind, we are trying to maintain a daily routine of experiences for Abby, hoping that we will be able to further our communication with her. The school notified us that they have received our completed, and very thick, packet of medical records, IEP's, progress reports and other necessary forms to begin the process of receiving a comprehensive Deafblind evaluation.

For those who aren't familiar with Perkins, you might recognize it from the story of Helen Keller. The girl who defied all odds and overcame her dark, silent world with the help of a special teacher from this school for the blind. Helen learned to use sign language and eventually went on to study at a University where she learned several more languages, verbally spoke in front of large audiences, wrote her own story and inspired people everywhere with her tenacity! All this before the age of hearing aids, cochlear implants, and other useful technology that we have now.

We are really looking forward to our trip to Perkins. Their Deafblind program is the best in the world (to our knowledge) and just the idea of taking Abby to see them sparks hope in us.

They will perform a complete evaluation of Abby including cognitive, behavioral, auditory, visual and many others. These people will help us develop an IEP that we can use to set realistic educational goals for our girl. We anticipate after leaving their campus that our family will be equipped with knowledge, ideas, encouragement and hope that we can help Abby come out of her dark world.

So, I thought you might like to see what a typical day looks like here.

Get up, dressed, meds, orthotics. Gait trainer- 30 min. Bean bag to rest- 10 min. Connect feeding bag. Music with movement.

(Using both hands to manipulate ball- Huge for Abby!)

Sitting in the Rifton chair for hands on activities- vibration switch toys, play doh, textured objects. Reading while using a braille book- guiding her fingers across the bumpy pages. Swing time- vestibular stimulation. Tummy time- development of trunk strength. High chair time- oral motor skills, swallowing practice. Out side time- going for walks outside in the brisk air. Feeling leaves, grass, sticks.

Meds at lunch time. Down for short nap. Afternoon- more of the same.

(Abby in her Rifton chair. We love it!)

These are the days we are at home. Mondays are feeding therapy days. Tuesdays she will receive Speech therapy at the house. We are waiting to schedule PT and OT for weekly visits as well.

This Thursday we are going to UCP for an initial PT evaluation! To supplement the services her school provides, we will be taking her to UCP for additional services... not sure how often yet.

Josiah is enjoying taking part in these activities too. He pushes Abby's gait trainer, and brings her toys to feel. Today he got out our pots and spoons and "cooked" us lunch on his stove (a paper stove, drawn with crayon)

It will be helpful to have professional input on what our time with Abby should look like each day. I certainly don't pretend to know. All that we've learned have been from reading about Deafblindness and the wonderful developmentalist we saw over a year ago, Christine Roman. Her knowledge and suggestions have inspired much of our activities.

We appreciate any prayers during this time of transition. I absolutely love having Abby home with us, but it does mean no-more-frivolous-outings. Most of our trips out have a very specific purpose usually surrounding a doctor's appointment... of which she has plenty!

(Cow. Josiah's best buddy)

"Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therin to be content"

Helen Keller

US blind & deaf educator (1880-1968)

Baby Jack!

2008-10-20T15:36:00.007-05:00

Our gorgeous nephew and tiny cousin has arrived! To our surprise, Jack Campbell Younger was born early Thursday morning, 10-16-08, at 3:44 am.

I had the amazing privilege of being present for his birth... and what a precious moment it was. My best friend (other than Patrick) and wonderful sister was the bravest woman I had ever seen!

Jack weighed 6lb 7oz and was 20 inches long. I could see resemblance's of both his sisters, but all in all, he is his own little man. And a darling one at that!!

Check out Christy's blog for a great video, and Lee's for more photos!

Congratulations sweet family! Can't wait to see you again.

Aunt Carolyn's visit and more...

2008-10-20T14:31:00.010-05:00

Whew. I am realizing how far behind I have gotten on the postings. So much excitement lately.

First off, Patrick's Aunt Carolyn came to visit us a few weekends ago. We always enjoy her company and the kids think of her as another special Grandma!

She came bearing gifts too! Amazing little Christmas outfits for both kids that she lovingly made herself! They are beautiful!! Such a touching gift.

Thanks Carolyn!

She gave me a starter course in smocking which was fun. I can see how time consuming it would be... but the results are so cute.

Then we took the kids to see Veggie Tales Live!!

These creatures have become some of Josiah's favorites. We listen to the cd in the van and watch the different stories at home too. He has memorized many of the songs and will be glad to sing them for anyone who asks! I have to say that I love hearing him singing in the van, especially when he belts out "God is so good, God is so good, God is so good, He's so good to Abby and me." Talk about melting my heart!

So we thought he would enjoy seeing them in real life. The show itself was visually a little over stimulating I think, and some of the music we didn't recognize. But when they sang some of his favorites, I could see his eyes light up and a surprised smile creep across his face!

Abby wasn't too interested. The music was very loud and the talking was too. She fell asleep. It had been a busy day already so she was pretty tired.

I probably enjoyed it most of all.

Back to the ER...

2008-10-02T16:27:00.000-05:00

Yesterday started out as one of the most stressful we've had in a while. Abby had a fever of 103.4 and was acting strange, and somehow I knew it would only get worse. I dosed her up with some Motrin and got her into a comfy position on the couch where she fell promptly asleep.

After grabbing a quick shower, I ran to check on Abby to see if she was still sleeping. Instead I found her seizing on the couch. I really only glanced at her before running to get her emergency medicine. I gave it and then ran around trying to get ready to head to the hospital. Poor Josiah just sat and watched me, probably thinking I had really lost it this time.

As the minutes melted away (8 of them) I realized I hadn't called her neurologist. I told the nurse what was happening and I could hear slight panic in her voice as she instructed me to give Abby a 2nd dose of Diastat and to call 911. At hearing this my stomach dropped and I don't really remember the next several minutes as I waited for the ambulance to arrive.

Until yesterday we've managed to avoid using an ambulance to get Abby to the ER for seizures. I think the Lord arranged it so that Patrick was usually close by or friends were near to help with Josiah. Because her seizure was only getting worse, even after 2 doses of Diastat, I have to admit that I was a tiny bit relieved to see the trucks driving up.

They gave her oxygen and more Diastat in the ambulance as we sped through traffic and red lights. I couldn't help but feel very overwhelmed remembering the other times Abby and I have been passengers together in an ambulance.

Once we arrived at the ER it was nice to be rushed to a room where a large team of people were standing ready. They got her IV on the first stick and gave her more meds. She seized for a total of 1 hour. One terrible hour.

The rest of the day was spent getting lab results, a chest x-ray, urinalysis and CT scan of her brain. All checked out ok except for a questionable chest x-ray. Her chest films are rarely clear and typically are found to have some spots of "something". The radiologist couldn't say for sure what he was looking at, but noted it could be a pneumonia developing or maybe spots of atelectasis (collapsed air sacs) from not breathing well during the seizure. Just to be safe the doctor gave her antibiotics through her IV and some for home too.

Thankfully, the doctor was amazed to find her blood gases to be ok, considering the length of her seizure. She kept her o2 sats high even after removing the oxygen mask. The main problem was her high fever, which crept up to 104.2. She remained agitated until we brought her home where she could get some real rest.

Today she is mostly out of it, but coughing and restless when she is awake. I can tell in her eyes that she feels pretty lousy and her temp is around 102. We are just glad to be at home.

After 7 weeks of illness and too many seizures to want to mention, we have prayerfully decided that she will NOT be returning to school. Although we feel that it has been good for Abby to have the interaction with other children; to hear them talking, singing and laughing around her; it is clear that her health must be our #1 priority. The therapy has been great too as it has allowed our family be together at home more.

Fortunately we will be meeting to change her IEP soon to arrange for homebound services again. We are hopeful she will receive some therapy each week at home, along with meetings with the teacher for the deaf. This is the part we really need help with. Communication with Abby is our biggest, most discouraging challenge. We want to connect with our little girl and give her a way to express her heart and mind with us.

Our hope remains in the promise that our Lord created Abby and has given her as a gift to us. His purposes for her life are far reaching and beyond our comprehension at times. But we are certain that He will provide all that she needs, and sustain our family through difficult days. The daily trusting is my personal challenge.

"Show me your ways, O Lord, teach me your paths;

Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.

Remember, O Lord, your great mercy and love, for they are from of old."

Psalm 25:4-6

A Special Visitor

2008-09-29T14:33:00.000-05:00

My parents have lived in China for over 20 years now! It's hard to believe until I break it down into all of my sub-memories of growing up, and then it seems like a life time ago that I was riding my bike to Chinese school with my red bandana on (only some of you will understand this part!).

Mom and Dad make trips back to the US periodically, some for business some for family time. We had a special treat before my birthday when Dad extended a business trip long enough to visit with his girls!!

It was so fun to get to catch up on life in person, face to face. The kids enjoyed seeing "Pipai" again too.

Happy Birthday Patty, my wife and best friend!

2008-09-23T12:16:00.000-05:00

Today is Patty's Birthday! First let me be very clear, I know her password and she does not know of this escapade to post about her birthday.

Happy Birthday Paba and here goes!

Last night as we were visiting with her dad, (he stopped by on his way back to China) he reminisced that the day Patty was born was one of the best days of his life. He did say that attaching a pink bow to his daughters head on her soft spot was not very comfortable and promptly removed upon exiting the Portland, OR. hosp many years ago.

25 things about Patty you may not know...

1 - She is an extremly hard worker, we have painted houses, built decks, rebuilt carburetors (2 months after Josiah was born), rebuilt an engine

2 - Excellent at rapelling and belaying climbers

3 - Althetic: Fierce at soccer (maybe to impress me, any thoughts from her teammates?), good swimmer, can snow ski well though she has only done it once, goes off rope swings...

4 - Creative: she has made baby blankets, scrapbooks, woodburning verses as gifts

5 - Talented wood worker: furniture

6 - She can put up crown moulding

7 - Patient: worked for years as a nurse while I finished school, married to me, has a 2-year old and a deafblind child.

8 - She loves Chick-Fil-A cookies and cream milkshakes

9 - Excellent cook: we had chinese food 4-5 nights a week during the early years of our marriage. I could not cook and she mainly knew chinese dishes.

10 - She is fluent in chinese

11 - She is a loving, protective and committed mom: When Abby was born she quit her job and spent 6 months in the NICU. She has a special way with Abby.

12 - Smart: she has a bachelors degree in nursing and remembers every date for Abby's surgeries (13 total) and procedures as well as all the medicine she has ever taken.

13 - She chose me and our kids over her career as a nurse

14 - She gets embarassed when I call her my trophy wife, which she is.

15 - She is very,very beautiful - obviously.

16 - She gave me a journal - Seriously, the entire year we were engaged she wrote me a letter every day in 4 volumes.

17 - She recently competed in the swimming leg of a triathlon

18 - She encourages me to buy motorcycles and other guy toys.

19 - She is my biggest cheerleader and best friend

20 - She can and has completly exchanged the furniture in two bedrooms all alone.

21 - She loves Thai and Vietnamese food

22 - She is passionate about saving the life of babies

23 - I am still her best friend after nearly 8 years of marriage and 3 dating - we have never broken up

24 - Loves to watch movies with me

25 - She misses Hummer every day

This is only the beginning of a list of who Patty is and why I love her so much. She has made me a very rich man indeed!

"A wife of noble character who can find? She is worth far more than rubies." - Proverbs 31:10

Stomach bug

2008-09-19T09:09:00.000-05:00

Abby is sick again with the nasty stomach bug.

Last night Patrick and I went to see the movie Fireproof on our date, thanks to some dear friends who gave us free tickets! About 30 minutes into the movie we got a call from our respite worker... never a good sign.

She told us Abby was vomiting and having terrible diarrhea. We left the movie and rushed home. Poor little girl was pale and limp as a dish rag as she continued to vomit. After some time of almost constant vomiting and wretching we got some Zofran called in for her.

Eventually she stopped throwing up and sat with me in the rocker. Just as we were thinking about putting her to bed, I saw her little hand start twitching. Before we knew it her whole body was convulsing.

We gave her rescue med (Diastat) within 3 minutes of the first twitch and called her neurologist. Fortunately the seizure stopped after about 5 minutes of full seizure activity!! Her breathing was a bit abnormal for a few minutes but thankfully she calmed down and fell asleep.

The BIG thing is that we Did Not have to go to the ER!!!

Abby slept like a rock all night long with no vomiting and no more seizures. Praise the Lord!

This morning she has a fever and still looks pasty, but awake and mostly content. Now we are praying the rest of us can dodge this one!

Born Alive Truth

2008-09-17T15:52:00.000-05:00

There has been much debate over many issues weighing heavy on the hearts of the American people during this political season. One such issue involves the termination of unborn human lives.

I saw these videos this morning. There's nothing quite like a personal testimony to destroy all the political jargon and squabbling, and lay the true issues out on the table.

The "Born Alive Infant Protection Act defines the "born-alive infant" to include every infant member of the species homo sapiens who is born alive at any stage of development."

It "Defines "born alive" to mean the complete expulsion or extraction from the mother of an infant, at any stage of development, who after that expulsion or extraction breathes or has a beating heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, regardless of whether the umbilical cord has been cut and regardless of whether the expulsion or extraction occurs as a result of natural or induced labor, cesarean section, or induced abortion."

SENATE AMENDMENT NO. 1. "Provides that a live child born as a result of an abortion shall be fully recognized as a human person and accorded immediate protection under the law."

Illinois General Assembly -http://www.ilga.gov

These videos speak for themselves and are worth looking at. Although I do not want to use our family blog as a political platform, I do firmly believe in the right to life for ALL babies.

For those who aren't familiar with Gianna Jessen and her amazing testimony, check our her site.

Born Alive Truth

My Boys

2008-09-10T13:34:00.000-05:00

I love to watch my boys. They both love the water! Patrick is a wonderful swimmer and seeing him in the water is like watching a graceful dolphin.

This summer we tried to focus on getting the kids in the water as much as possible. At first Josiah didn't like getting his face wet, but by the end of our Florida vacation at the beach he was doing this...

This past weekend Patrick finished his 2nd Triathlon, The Frantic Frog! He started out swimming 400 meters in open water, biked 15 miles and finished the race after a 3 mile run. The kids and I had a great spot by the water where we could watch him swim and cross the finish line!

He came in 10th for the swim out of 400+ people participating!! I think he will only get faster on his bike and run. He hopes to do more Triathlons next summer... especially collecting the fun T-shirts!

We are very proud!

A quick visit before the race

All the swimmers lining up on the dock

Almost finished!

Happy Birthday Abby!

2008-09-03T10:03:00.000-05:00

Today is the day! Five years ago this morning at 9:53 am our tiny baby entered the world. So much has happened in these past 5 years! It's hard to believe Abby is such a big girl after starting out so small.

Abby is now 29 lbs and about 37 inches long. She looks like a little girl now and no longer like a toddler. She is very aware of her crazy family around her and seems to enjoy listening to our interactions... especially Josiah! She teaches us more every day about pure love and about trust. We long to trust our heavenly Father the way she so willingly trusts us as her parents.

This year has been a full one! Full of illness, changes and some progress. It has also been full of a spirit of thankfulness in our family. We feel the Lord's mercy and blessing on us every day. He is Good!

Because it has been a big year for Abby, this B-day movie is a little Long! We tried to include pieces of the major events at least.

We love you Precious Abby!

Matthew 6:33-34

But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Sick Again

2008-08-30T23:44:00.000-05:00

After planning a day of fun for our family including swimming, a picnic lunch and visits with some horses, this morning proved to create something different.

I found Abby in her bed this morning seizing. Not her typical weekly/daily seizures but the kind that only come with illness. We had no clear warning signs that she wasn't feeling well. Because the seizure was already involving her whole body, and not knowing how long she had been like this, we quickly gave her rescue medicine (Diastat).

Not going into the details we ended up in the ER an hour and a half later with Abby in worse shape than she started. Fortunately the nurse got IV access on her first try and then loaded her with several meds to stop the seizure.

Not long after her seizure had stopped her temperature spiked to 104. Blood work came back clear which means she has another virus.

Tonight we are home feeling drained and exhausted. Abby has been unusually agitated all day, including moaning and wakefulness not typical of her post-"prolonged seizure + incredibly powerful drugs" episodes.

We are heading to bed to try to get some rest, but wanted to leave you with some pictures of today.

Josiah, his usual cheerful self, making us smile during a discouraging day.

New Baby Younger

2008-08-27T15:37:00.000-05:00

Isn't he beautiful!?

This is a "preview" meeting of my new nephew due to arrive around November 4th! I got to feel him kicking last weekend and felt bonded to him even more.

He is 30 weeks gestation and growing nicely. His mommy is my very special friend and sister. As of today his name is still a mystery, but I'm sure it will be adorable... just like his sisters'.

Anna and Norah anxiously await his arrival as well. I've caught them practicing their mothering skills, and there is no doubt they will be Wonderful Big Sisters! Eager to teach him how to laugh, love and enjoy dessert!

2008-08-22T10:09:00.000-05:00

The Triathlon was so much fun! Patrick and his team finished strong and I managed to complete the 400 meter swim without too much drama.

There was a large group of participants and supporters who showed up to give their support for Team Adriana. We all look forward to meeting the little girl who inspired this joint effort!

Pray for the Clark's adoption of Adriana. They have run into several delays and possible complications this week with their paper processing. Check out their blog for more accurate details. I'm sure they would appreciate any notes of encouragement!

These pictures give you a taste of the day. A slide show of the event is coming SOON!

Dave, Patrick and Daniel

Dave and Gracie

Race numbers

The Race Begins...

2008-08-15T16:04:00.000-05:00

TOMORROW!!

Bright and early Saturday morning we will run, bike and swim to raise money for our friend's adoption. Little Adriana is waiting in Guatemala to come home to her family!

It should be fun!

Check back in a few days to hear about this adventure.

Abby is doing better. She is still not feeling back to normal, but has not had fever today! Thanks to those who prayed for her this week!!

Sick on a Rainy Day

2008-08-12T15:56:00.000-05:00

Today has been rather strange. Abby woke up not acting herself. She was retching and trying to throw up, along with seizure like behaviors. Not like her typical seizures (if you can call them "typical"). I could tell something was wrong.

After watching her and using her VNS magnet several times, I gave her morning meds. She continued this odd behavior for about 35 min before I called her neurologist. She had me give more of one of her daily seizure meds and watch her for another 20 min. I called her back after 30 min when Abby started having jerky movements that were becoming rhythmic.

The doc told me to give Abby Diastat, which I was really trying to avoid. But since Abby didn't have a fever she said we could hang tight at home and watch to see if she would improve! She started to relax a little, but with in another 45 min her jerky movements continued and picked up a little momentum.

Once again we called our neurologist who told us to head to the ER. Fortunately for us it was another pretty uneventful trip. By the time the residents had examined her and gotten her vital signs she had mostly stopped the jerking, although she was still very agitated.

We are home now and Abby has been vomiting and started running a fever. Although I'm hoping this will not progress into our pattern of hospital stays and prolonged seizures, I've packed my overnight bag and have started aggressive Tylenol/Motrin treatment!!

Swim For Melissa

2008-08-11T20:32:00.000-05:00

This weekend topped off the fund raising efforts of all the families participating in the Swim for Melissa event!

It was amazing sitting by the pool watching group after group of enthusiastic kids swimming to help improve the lives of premature babies. The only thing that would have made it more fun for us is to see Abby swimming with them. After being a small part of this event we are hopeful that she will swim next year! With a little help from Dad of course.

Thank you to Julie Golos, Rhoda Klopfenstein and David Clark for contributing on Abby's behalf. All together our community raised over $133,000 for the Huntsville Hospital Neonatal Unit to buy state-of-the-art Giraffe Omni beds! These beds truly were a blessing for Abby when she needed protection, comfort and high tech care.

Abby made a short appearance Saturday on WHNT news channel 19 evening news!

Check out their site and look under Top News Story Flash for the "Swim for Melissa" clip.

Triathletes for Adoption!

2008-08-05T14:58:00.000-05:00

Meet our dear friends David and Gracie Clark. This post is about their family.

We met them almost 2 years ago and instantly clicked. Our families have some major things in common: we are all outdoorsy type people, we enjoy sitting together and chatting over a good cup of coffee (or Mocha), and we've all been changed forever by our very special preemies.

I'll let them tell their story about their precious preemie son Drew, and the events that have led them to where they are today. Trust me, it will be worth your time and tears to get to know them.

Fast forward to August 2008! The Clarks are hoping to finalize a long awaited adoption of a little girl in Guatemala. Adriana is 20 months old and has some special needs including vision loss (CVI), epilepsy and a dislocated hip. Please visit her site to learn more about this gorgeous child!

This brings me to the point of this post. You might be wondering about the title for today. Yes, we have become Triathletes for a cause!

For those who know about the International Adoption process can probably guess what we are up to. For those who don't... well, let's just say Adoption is Very expensive and time consuming, but so very worth it!

www.teamadriana.com

Patrick and I have committed to participate in an upcoming Triathlon in order to raise money to help bring Adriana home from Guatemala! We are asking for friends and family to rise up and agree to sponsor us as we run, bike and swim for the Clarks.

Patrick will run 3 miles, bike 6 miles and swim 400 meters. I am swimming on a team with two teenagers who will be accomplishing the running and biking. It should be fun!

David and Gracie first heard of Adriana's need for a home through an organization called The Shepherd's Crook. This ministry strives to find families for children with special needs from all over the world!

Your tax deductible donations will be managed by The Shepherd's Crook for Adriana's adoption. Every child they list has an account open in their name for donations specifically made on their behalf for adoption purposes. On-line donations are safe and simple! If you would prefer to mail a donation instead, mark your checks "Adriana Clark" and send to:

The Shepherd's Crook Ministries, P.O. Box 773, West Chester, OH 45071

We feel privileged to be part of something so special and so close to God's heart! Adoption is such a wonderful way to obey our Father's command to care for the orphan. Adriana has a special place in our hearts and we know God has a wonderful plan for her life.

Will you join us in this exciting adventure?! We would love to count you in!

James 1:27

"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

A Giraffe Bed?

2008-07-23T14:10:00.001-05:00

I know, it sounds strange to most, but this really is what they are called. For those who are confused, a Giraffe Bed is a special "all-in-one" habitat for premature babies.

I'll try to explain why this is meaningful to us.

On August 9th our family will be joining hundreds of other families with children who spent time in the Huntsville Hospital Neonatal Intensive Care Unit (NICU). The purpose is to raise money for these special beds in order to maximize the healing and growing that takes place in this special unit. It will be a fun day of fellowship and sharing stories... and of course lots of swimming!

Although Abby is too small to swim on a team, she will be participating with many other "little" swimmers in the effort to raise as much money as possible for other tiny preemies.

It wasn't that long ago that Abby lived in a Giraffe bed. It provided the best environment for her to rest, to safely be on the ventilator, to have the NICU noises muffled, and to be easily accessible for the nurses and docs. With the lid closed Abby had humidified warm air pumped in all around her. This protected her delicate skin. Most of the time there was a cover draped over the bed to provide darkness, more peaceful sleeping and protection for her immature eyes.

There were four port holes that we could stick our hands in to change diapers, touch her and cover her head with a beanie animal if she was restless. Offering her tiny paci was another excuse for us to reach in to her environment.

In case of an emergency with her stats, the lid could be quickly and automatically lifted high above our heads for complete access to our baby. This happened many times. After surgeries it was just left up while it provided radiant heat to keep her warm down below.

These are a few pics of Abby in her "castle," as the nurses called it!

Abby in her first outfit (notice the bear in the above picture... Abby's wearing her dress!)

Abby recovering after 3 surgeries in 24 hours.

Corie, Abby's special primary nurse, standing by Abby's Giraffe bed with the cover on.

All this description just to say that we recognize the important role these special beds played in our preemies' NICU stay, and that we long to help other babies like Abby!

Check out Abby's Page on the Swim for Melissa Donation site! If you feel led to help us raise money for this special cause, you can easily do so from Abby's page.

Thanks so much to all of you who care so much about our girl!

We're at the Beach!

2008-07-16T14:47:00.001-05:00

We are all having a blast in Florida! Gazing out over the ocean, taking walks in the sand, playing in the pool... and of course eating!

This morning Patrick and I took a kayak out for a dolphin search. Once we got into the deeper water there weren't any dolphins, but tons of jellyfish!! Yikes! They were beautiful to watch gliding with the waves. We were soo glad to be IN the boat.

Glaucoma update

2008-07-09T14:53:00.000-05:00

We saw the glaucoma specialist last week. Several good things came out of the visit. The doctor used two more methods of examining her eyes in addition to the one used at her retina check up (applanation tonometry).

He used a tiny ultrasound placed on her eye ball to measure pressure and consistently got numbers in the 30's. This was good. Then he measured the thickness of her cornea and found it to be abnormally thick (615 microns)... which is also good. Any measurement more than 600 microns is unusually thick, and less than 500 microns is considered thin.

In Abby's case her cornea's are thick because of multiple surgeries, which in turn makes the first pressure test higher than it should be. The doctor also thinks that the eye drops have caused some improvement.

Another eye drop was added to our regimen and we are scheduled to see him again in one month. He will measure the eye again and re-evaluate where to go from there. We are all very hopeful that the drops will keep her pressures low enough (20 or below). If they persist above 30 with the two drops then we might have to consider the surgery. For now the doc said she shouldn't be able to feel any discomfort from her pressures and he hopes to see improvements in 4 weeks!!

We all came away from the appointment very encouraged and hopeful, but will still be in prayer for healing of this problem.

Another fun note:

Madison has opened a playground for special needs children! It has been a project our family has been involved with this past year along with several other families. The ribbon cutting ceremony was held last Wednesday and we got to see the park for the first time.

One of the goals we all had for this park was for typical children (siblings, family, friends) to be able to play along side children with various special needs. I think it was accomplished! Our favorite part is the different kinds of swings. Abby can easily swing in at least 3 of them. She and I went down the slide together, while Josiah tried to shoot hoops in the adjusted basketball goal.

We really enjoyed getting to play while watching other kids that we have gotten to know do things that would be extremely difficult at a regular play ground! The idea was spearheaded by a young lady who lives in our city. She was born with Spina Bifida and her mobility is limited to a wheel chair. She got to swing for the first time in a specially designed "wheel chair swing".

Some times it's the simplest things in life that bring the most joy.

The Huntsville Times ran a story about the park, and news channel 19 also aired a short section about it. We missed the news report but did get a copy of the paper.

The pictures aren't very clear, but we forgot our camera on opening day and wanted to give an idea of what it looks like.

This past weekend we headed up to Oak Ridge/Knoxville for our yearly vacation with my sister Christy and her family! We all had a blast.

Pictures of our weekend coming up soon!

Precious Eyes

2008-06-24T14:57:00.000-05:00

Yesterday Abby added a new diagnosis to her long list. During her yearly check-up with her retina specialist he decided to check the pressure in her eyes. As I watched his face during the short test I quickly realized something was wrong. They poked both of her eyes with a small tool and read the numbers.

Normal eye pressure falls between 8-21 mmHg. Abby registered 48 mmHg in her right eye!

The doctor looked up and told me that Abby has glaucoma. Her right eye is not draining the fluid properly so it has been building too much pressure. Abby's history with ROP (retinopathy of prematurity) and her multiple eye surgeries have caused scar tissue to clog the drainage system in her eye. If left untreated, the building pressure in her eye can eventually damage the optic nerve and completely destroy any vision she has left.

ROP is one of the many complications of Abby's prematurity. It can rob normal vision from it's tiny victims. In our case, Abby started receiving eye exams just a few weeks after her birth.

Her first exam was delayed a little longer than other preemies her gestation because she was in such critical condition. After about 8 weeks of weekly exams she started showing signs of Retinopathy of Prematurity. This is abnormal blood vessel growth inside the developing eye.

The majority of eye maturation occurs between 28 and 40 weeks gestation. When a baby is born too early, the normal development of these blood vessels stops. The body some how triggers new growth (long list of possible reasons: oxygen, being on ventilator, other complications) but it can become very abnormal, forming scar tissue that eventually grabs the retina and pulls it away from it's natural position against the back of the eye.

Abby had treatments for ROP beginning with laser in both eyes. She remained stable for a while but eventually showed drastic eye changes that needed more treatment. She was transferred to the University of TN's NICU for a special surgery to repair the worse eye. This surgery failed and the surgeon told us there was no hope.

Our wonderful neonatologists at East TN Children's shared one last idea before we gave up.

I flew with Abby in a special medical transport plane to Michigan for treatment at William Beaumont Hospital. Dr. Trese is a world renown retinal specialist who specifically treats premature infants. During our month long stay in MI Abby had 2 more surgeries (vitrectomies). One retina reattached and one remained completely detached.

Abby's vision is still not entirely known to us. According to her records her left eye's retina is completely detached with no vision potential... but we know she can see light. Her right eye has a reattached retina, a visible macula and a pale, intact, optic nerve. We know she sees light and also some objects in that eye.

Abby is now getting eye drops twice a day in her right eye, and will see a pediatric glaucoma specialist in Birmingham next Thursday (July 3rd). Our doctor told us children usually need surgery to correct the problem.

We find ourselves starting down a new road of unfamiliarity. It seems strange that Abby's vision could get any worse... but I suppose we shouldn't be surprised at anything.

Another chance to learn to Trust our Lord. It makes this verse have a whole new meaning.

"Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He will make your paths straight."

Proverbs 3:5-6

My Utmost for His Highest devo for today! Seemed fitting to share.

Happy Father's Day!

2008-06-19T13:36:00.001-05:00

Since I haven't posted in a while, I thought I should put something up!

Abby is finally feeling better. She had more fever this week, but now it's gone and the mucous is making it's way out as well. Finally!

This past weekend we went to TN to celebrate Father's Day! We had a wonderful time with family just being together. Saturday we went to the zoo with Grandma, Papa, Aunt Connie and Matt which was really fun. It was cool enough to enjoy walking around the park, checking out all the neat animals. Josiah still remembers a lot of his animal signs which was good to see.

That night I got to see my sis and her girls! We enjoyed chatting, catching up, talking about pregnancy (she's expecting) and watching the girls play. I always feel refreshed after being with them.

Sunday morning I got Patrick up very early (4:30) to go to a special spot we used to enjoy before we were married. It did involve hiking, so I'm pretty impressed with both of us that we made it to the top, despite our minimal energy. It was definitely worth the effort as we enjoyed the gorgeous early morning view!

We spent almost the whole afternoon on the lake!! Another favorite for me. Basking in the sun and actually swimming for the first time this summer. The kids both got in the water, although we did see a few tears from J. He wasn't sure he liked skiing on the big disk. Papa and Grandma's boat is always a fun treat!

Abby seemed to love the water, she was so relaxed and even kicked her legs a little. (more pictures to come)

Now we are home back into our routines. This week we hope to hear back from the surgeon about Abby's upcoming surgery. Long story made very short, we are expecting that Abby's file is now containing all the necessary missing pieces for the surgeon to examine. I left a message for his nurse this morning. So now we wait to speak with them again. Hoping for a more complete, encouraging conversation this time.

It's difficult looking forward to surgery... not because we want it, but only because we feel that Abby needs it. She isn't thriving on her GJ feedings and continues to lose skills that she seemed to enjoy just 1 year ago. It brings so many mixed feelings. Dread of surgery and hope of healing.

Thanks for remembering her!

Fever = ER for Abby

2008-06-09T14:31:00.000-05:00

This weekend we had the privilege of a visit from Grandma and Papa! While Patrick and I worked on our "almost remodeled" bathroom, Josiah and Abby played with G and P.

Saturday morning Abby woke up with a fever and some coughing. We started loading her up with Motrin and Tylenol, trying to keep her hydrated and comfortable. From past experience I went ahead and pulled her Diastat (emergency seizure med) out and left it sitting out on the kitchen counter... easily accessible.

She had a restless night and coughed a lot. Trying to keep her fever down we set the alarm to give Motrin/Tylenol through the night.

Sunday morning she still had a fever with some jerky movements. Eventually the jerky movements turned into rythmic twitches of her lips; which turned into twitches of her left hand, and arm. With in about 30 minutes of this pattern, including swiping her VNS every 3 minutes or so (which temporarily stopped the seizure), these focal seizures turned into general convulsions. Fortunately we were ready this time with a new plan!

As soon as the seizures turned from focal to general we dosed her with the Diastat, made the necessary phone calls to her doctors, and loaded her into the van. By the time we left the house (7 min after Diastat) her seizures had stopped and she was totally out of it. We drove to the ER as instructed and calmly went through all the registration procedures. It was really nice not being in a huge panic, running into the ER with Abby still seizing out of control and the staff pouncing on her.

Once she was settled in a bed and hooked up to the monitors we sat back and relaxed for the most part. Abby slept, and they agreed to not stick her for blood work and IV fluids unless it became necessary. It was the most organized and easy going trip to the ER we've ever had. The neurologist wanted to keep her until the meds wore off (4 hrs), but then she spike a high temp (104) so they kept us another 2 hours to make sure she didn't seize again. We left the hospital around 6 pm, just in time to be home with our family to enjoy a nice dinner together.

Today we met with our neurologist in her office for a scheduled appointment. Basically we talked about yesterday's event, confirmed our plan of action, addressed her medications again, increased her VNS settings and discussed her reflux symptoms and requested a letter of release for surgery. She told us it is very common for surgeons to ask for a neurology release before having surgery. This made us feel better.

We learned something new too. She said Abby's VNS will have to be turned off before surgery b/c of a tool commonly used to cauterize that would influence the VNS function. It is simple to turn off by using the wand also used for dosage setting. It will be done by a neuro nurse practitioner at Children's before surgery, and then will be turned back on after it's over. Glad to know that!

We also found out she has lost more weight. She's down to 12 kg (26.4).

Then we discussed the possibility of a port placement for future blood draws and IV meds/fluids that might be needed. She explained the risk of infection that comes with a port placement would also put the VNS at a much higher risk for infection. If the VNS becomes infected it would most likely have to be removed. This new insight drops the need for quick IV access down a few notches on our priority list for Abby. We might reevaluate in the future if things change, but for now we are glad to have this decision made.

Poor Abby is still pretty miserable. Her fever is down some, but she is coughing a lot and is also now vomiting. Today hydration has become our focus and just trying to keep her comfy.

Sickness sure is a drag, but at least we are home!

His Assurance

2008-06-05T13:59:00.000-05:00

"... Never will I leave you; never will I forsake you.' So we say with confidence, the Lord is my helper; I will not be afraid. What can man do to me?"

Hebrews 13:5-6

We had our appointment yesterday in Birmingham with the GI surgeon for Abby. He was a sincere man, a good listener and it was obvious he wanted to help Abby.

In an attempt to keep my emotions in check, I'll keep this brief (or spare you the details).

Some very important information seemed to be lacking from the file the surgeon was holding. We did our best to describe the past 9 months of symptoms and numerous tests/procedures that Abby went through to finally end up in his office. As we concluded our visit it was decided that in light of the fact that our "puzzle" was missing some pieces, we needed to gather more information before surgery can be scheduled.

We've made our (several) phone calls, requests for clarification and are currently gathering more information to add to her file.

Giving this issue up to the Lord and actually letting go of it has proven to be a heavy challenge for me. This is all I can say at this point without becoming irrational in my writing.

So, instead of flowing with my natural tendency of worrying about Abby until I get physically sick, I'm actually trying to pry my fingers open to let God take her.

I read in My Utmost For His Highest today:

"My assurance is to be built upon God’s assurance to me. God says, "I will never leave you," so that then I "may boldly say, ’The Lord is my helper; I will not fear’ " ( Hebrews 13:5-6 ). In other words, I will not be obsessed with apprehension. This does not mean that I will not be tempted to fear, but I will remember God’s words of assurance."

"The faith of many people begins to falter when apprehensions enter their thinking, and they forget the meaning of God’s assurancea— they forget to take a deep spiritual breath. The only way to remove the fear from our lives is to listen to God’s assurance to us.

What are you fearing?"

"When it seems that there is nothing and no one to help you, say to yourself, "But ’The Lord is my helper’ this very moment, even in my present circumstance."

"Take hold of the Father’s assurance, and then say with strong courage, "I will not fear." It does not matter what evil or wrong may be in our way, because "He Himself has said, ’I will never leave you . . . .’ "

Human frailty is another thing that gets between God’s words of assurance and our own words and thoughts. When we realize how feeble we are in facing difficulties, the difficulties become like giants, we become like grasshoppers, and God seems to be nonexistent. But remember God’s assurance to us— "I will never. . . forsake you."

Enough said.

We are earnestly praying for God's will to be made known to us about Abby's life. Her reflux symptoms have practically consumed us (in addition to many others) these past 9 months. Patrick and I have done everything in our knowledge and power to avoid surgery. We've watched her gradually losing weight, losing oral skills, losing the ability to swallow her saliva.. the list goes on.

But also just like all of her other challenges, we are COMPLETELY powerless to fix them. We find ourselves thrown back into the "Spiritual School" of Trust. Do I really trust Him? Do I trust Him to orchestrate every detail pertaining to her health, growth and comfort?

I can honestly say that trusting the Lord is my only goal for this day.

Our family would be so grateful if you would pray with us for resolution of this problem. Specifically for healing, for clarity in communication among all of her physicians, and lastly for wisdom.

Thank you!

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God."

Hebrews 12: 1-2

Girls Weekend + 1 Little Man

2008-06-02T20:26:00.000-05:00

The kids and I went to TN to spend a wonderful weekend with my sis and her kids! We always have a blast together.

Thanks girls! We miss you...

(Before playing, skip to the bottom of this page to pause/stop blog music)

Playground Process

2008-05-27T22:09:00.000-05:00

We have a new swing set outside! Patrick and I built it together a few weekends ago. It was fun! No real plans, just a vision and big pile of wood.

We couldn't have done it with out Aunt Carolyn, who came to take Abby and Josiah duty while we worked. Thanks Carolyn!

Abby has a new swing just her size with the support she needs. It works great! Josiah loves to climb into the fort and touch the trees.

Here are a few pics of the process...

Now they can both swing to their hearts' delight!

Prayer for the Chapmans

2008-05-22T08:35:00.000-05:00

This morning Patrick called to tell me the tragic news of little Maria Chapman's death.

Report from the Tennessean:

"Steven Curtis Chapman's youngest child died Wednesday evening after being struck by a car driven by her teenage brother in the driveway of the family's Williamson County home.

Maria, one of the Christian singer's six children, was taken by LifeFlight to Vanderbilt Hospital, which confirmed the death, according to Laura McPherson, a spokeswoman for the Tennessee Highway Patrol.

The 5-year-old was hit by an SUV driven by her teenage brother, she said. Police did not give the driver's name.

The teen was driving a Toyota Land Cruiser down the driveway of the rural home about 5:30 p.m. and several children were playing in the area, McPherson said. He did not see Maria in the driveway before the vehicle struck her, she said.

"It appears to be a terrible accident,'' McPherson said.

No charges are expected, she said. The accident was witnessed by two other children; the entire family was home at the time, McPherson said."

I can't imagine the shock and pain this family must be experiencing today. We wanted to send this out so that folks who haven't heard yet could be in prayer for this family. Steven C. Chapman has been one of our favorite Christian music artists for a long time. His passion for orphan relief and international adoption has helped hundreds of children, especially in China.

Maria was one of three Chapman daughters adopted rom China. His blog includes several darling videos of Maria and her sisters.

Our hearts especially go out to the brother driving the SUV yesterday. His life has changed forever. Please pray for his heart during this tragedy. He needs special comfort and healing.

Another New Button

2008-05-19T14:53:00.000-05:00

(Abby with temporary Foley cath in place of GJ-tube)
"Rock of ages cleft for me, let me hide myself in thee;

Let the water and the blood, from thy wounded side which flowed,

Be of sin the double cure;

Save from wrath and make me pure.

Not the labor of my hands can fulfill thy laws demands;

Could my zeal no respite know, could my tears forever flow,

All for sin could not atone;

Thou must save, and thou alone."

This hymn (sung by Chris Rice in his new album Peace Like A River) played loudly as Abby and I drove to the hospital last Friday morning for another GJ-tube replacement. It was pulled out (by accident of course) during a therapy session the day before.

(Emergency tube securely taped, so as not to lose it while in the car!)

My stomach was in knots and I dreaded the day ahead of us.

I think my body/nerves have become programmed some how to do certain tricks when I drive near a hospital. It probably started when I was in nursing school... waking up before dawn, feeling nervous about my new responsibilities and spending hours at a hospital. Then as a labor and delivery nurse driving to work feeling the pressure and anticipation of my shift... not knowing what sort of night it might be. Some were joyful as I helped new people enter the world; some were grief stricken as I cared for new babies who would never take a breath.

But this feeling was mostly solidified during the hundreds of trips I took to the East TN Children's Hospital to visit my tiny baby in the NICU. It's difficult to explain or describe the sinking sense a parent gets while making these treks; knowing your child is critically ill but not knowing what will happen from moment to moment. Hoping against hope that your child will have a good day, and that you can hold it together until you are alone.

So going to hospitals now brings all those emotions to head, even if I'm just going to see someone I barely know. The smells, the sounds, the waiting rooms; they all stir up an incredible sick feeling deep in my gut.

Anyway, listening to "Rock of Ages" on our way to Abby's procedure somehow lifted the heaviness and temporarily soothed my pitted stomach. I realized once again how much I need to give Abby over to the Lord. This process has taken me 4 1/2 years to learn and I'm still forced to practice every day. Some days my grip is so tight I lose sight of everything else around me. It's like I can't move my head, I'm just looking straight at Abby, blocking all other voices and images out so I can try to fix her. This is probably why there are days where I feel so totally drained, depleted and discouraged that I haven't "fixed" her. Isn't this what mothers do? Kiss the booboo's away, wipe the tears and hug their children until they are better! It works with Josiah... why won't it work for Abby?

"Thou must save and thou alone."

(Josiah-after waking him up to take Abby to the GI doc)

Back to Abby...

Friday ended up being a longer morning than I had anticipated. The same nurse we have seen the past 4 procedures came to start Abby's IV. I was glad to see him because he is one of the only people who have had luck with her troublesome veins. He brought another nurse with him and together they searched and searched for a useful IV spot. They stuck her three times and finally got a good vein... but it took over an hour. While they looked, they also talked with me about getting some sort of central line in for Abby. They emphasized that with Abby's issues, her young age, and the poor quality of her veins, this process of starting IV's will only get worse with time.

This isn't the first time a porta cath or some other form of central line has been mentioned for Abby. The last ER visit and several hospital stays, various docs and nurses have made comments about it... after struggling to start an IV or draw blood. It's probably something we will be looking into over the next few weeks before her surgery. Perhaps both could be done at the same time.

They kept Abby back in the procedure room for much longer than usual. It was making me nervous, but the nurses assured me that she was fine. The last time she had her GJ replaced it only took about 15 minutes for the entire procedure.

Finally after 45 minutes they wheeled her back into the room. The nurse said he had trouble getting the tube in, not sure why. Possibly resistance from scar tissue or something. Thank goodness she was put to sleep.

At that point I was just glad to have her back! She was pretty sore for the rest of the day and a little wiped out.

"Nothing in my hand I bring, Simply to the cross I cling;

Naked, come to Thee for dress;

Helpless look to Thee for grace;

Foul, I to the fountain fly;

Wash me, Savior, or I die.

While I draw this fleeting breath, when mine eyes shall close in death,

When I soar to worlds unknown,

See Thee on Thy judgement throne;

Rock of ages, cleft for me,

Let me hide myself in Thee."

Fundo #2

2008-05-13T15:08:00.000-05:00

A new week of beautiful Spring weather has brought with it some relaxation and retreat from the ever present worries of the past month. Our family enjoyed a fun weekend out doors during a church family get away! The fresh cool air and peaceful surroundings helped calm our souls and forced us to breathe deeply of the Lord's goodness.

Although Abby got sick on Saturday with strange seizures and vomiting, we were able to stay in the mountains with our friends and family instead of rushing to the hospital. At one point it seemed imminent that Abby was starting one of her relentless, "status"(prolonged) seizures, but thankfully she finally fell into a restful sleep. We had prepared to leave and the van was packed, but a dose of Tylenol seemed to stop the seizure cycle.

Before our family drove to TN for this wonderful weekend, we had a lengthy discussion with Abby's GI doc about the test results we had been given. Without repeating all the details, our conversation mostly boiled down to the fact that Abby's esophageal biopsies continue to show reflux regardless of aggressive treatments. He felt this finding in addition to her clinical symptoms pretty much closed the deal on the need for surgery. We agreed that if a second Fundoplication gave her a higher quality of life, than it was worth the risk of surgery.

We have an appointment with a GI surgeon June 4th, at Children's Hospital in Birmingham. In the meantime we have been trying to squeeze in sooner, waiting for a cancelation. We are hoping that she could have the laparoscopic method done this time because it is a much simpler procedure with a less painful recovery. Because Abby has had this surgery done before using the "open" method, we aren't sure if she could have the lap method this time. From what we have read it is unlikely that she can, due to the scar tissue in her abdomen from multiple abdominal surgeries in the past. The open method includes cutting her abdominal muscles again, which will set her back physically for a long time.

Just like most procedures there are no promises of complete healing, but we are praying for exactly this! Looking back to her first Fundo (June 2004) and the months following, we now recognize all the ways she made progress when reflux wasn't her main enemy. She was eating some baby foods and was able to gain weight with her G-tube feeds. She was a happy, vomit free baby. We are praying to see these and hopefully more improvements post-surgery this time around!!

It has been a difficult, time consuming and draining decision to do surgery again. At this point we feel that we have given enough effort and time to see improvements, and none have come. In reality, over the past 6 months her symptoms continue to worsen.

I know I've said it before, but I have to say it again... I Hate Reflux! Never in a million years would I have imagined my child could suffer so much from something most people consider as a mere discomfort or nuisance. It has become a life altering disease for Abby, as I know it has for other preemies as well. You just can't imagine how difficult it is to not be able to feed your child, watch them enjoy yummy ice cream or drink a delicious smoothy, until you have one yourself. We've long passed the initial disappointment of it and have come to the place where we just want her body to be fed and for her to grow and thrive.

At feeding clinic (every 6 month appt.) last week they refused to try to feed her anything because her Barium swallow test had labeled her "at risk for choking and aspiration" due to her inability to swallow. Instead of inability I would say it's more of a refusal to swallow. So we spent the whole time discussing her inadequate growth and the changes we needed to make to her j-feeds. Basically she has not gained any weight in the past 2 years but has grown over 3 inches. She is 0%ile for weight and 1%ile for height.

Honestly I'm not terribly worried about the growth chart because Abby is her unique self, a former micro preemie and a child with CP. All of which should (and some do) have their own growth charts!

If you have #1: read this far, and #2: haven't fallen asleep, than you truly do love us! The wordiness of this post is probably due to the lack of posting lately and the depth of emotions at our house. Please forgive me, I'll try to keep them shorter!

And thank you for caring enough to trudge through the details with us. But most of all we covet your faithful prayers for our little warrior!

Test Results

2008-04-28T15:43:00.000-05:00

Results came in today. First of all Abby's blood work came out normal! Yeah! It doesn't look like she has any sort of infection (CRP level) and her hypothalamus is "probably" not the cause of her wacky temps. I suppose we can chock her low grade fevers into the "Fever of Unknown Origin" box and leave them there. Honestly we haven't been paying too much attention to her temps lately because other issues have taken precedence. Yesterday it was 99.8, which 'technically' isn't considered a fever. Hopefully this issue will eventually resolve itself... but in the meanwhile, we will turn our energy towards other things.

Reflux.

The GI office called with her Gastroscopy and pH study results. Despite efforts to prevent/decrease Abby's reflux over the past 6 months (increased Nexium, and J-feedings), her esophageal biopsies showed reflux. Although this is discouraging, we aren't surprised.

Official report: "The pH probe study didn't show a lot of reflux but what did come up is very irritating to her tissue".

This report didn't seem very quantifiable or comprehensive, so I pushed for more details. Unfortunately the doc doesn't make these calls himself, so the nurse who is just reading from a brief summary can't usually answer our questions. As I tried very hard to be patient and friendly I still wanted more info. She was able to tell me that the test showed a total of 17 episodes in the 24 hr period. This didn't sound too bad to me initially, remembering that Abby's first pH probe (6 months old and 5 lbs) showed over 500 episodes! But then realizing that she is not getting any feedings into her stomach and is only secreting gastric juices that are still backing out of the stomach into her esophagus seems concerning. She wasn't able to tell me how long the episodes lasted and if they correlated with the diary we kept during the test.

The doc ordered an increase in her Nexium to 3 times a day, and encouraged us to try Carafate (a liquid coating). This should be interesting as Abby will have to swallow 2.5cc of liquid. Might not seem like much but you'd be surprised what a challenge this can be in kids with dysphagia and oral motor dysfunction... not to mention a kid who just plain Hates to swallow! We'll see how this goes. We are supposed to give it 2 weeks before we consider more aggressive measures.

I'm guessing we will go back in to speak face to face with the doc about the results and obtain more detailed information and hopefully form some type of plan.

Abby had feeding therapy today. Her OT has noticed a sharp decline in her oral skills and swallowing since last fall. Abby no longer tolerates the hour long session like she did before. There are no signs of swallowing at all, rather big sloppy messes in the bib. We still plug along trying to give her a fun oral experience with hopes of feeding improvements to come.

Josiah has started potty training! Yikes. I don't know how committed he is to his new potty chair yet, but I guarantee he will have plenty of opportunity to become very familiar with it. We bought him some super cute Big Boy "undies"! He likes wearing them.

Useful Potty Training tips are welcome!

Endoscopy Day

2008-04-24T14:24:00.000-05:00

Today Abby had her Gastroscopy procedure. We got to the hospital bright and early at 7 am for outpatient admission, then off to the procedure unit.

After a clear warning about the quality of Abby's veins, the nurses were able to find a good one for her IV and blood was drawn for labs after 4 sticks. Prayers were being lifted up not only by me during this yucky time, but also by the nurses! I was so thankful to see blood dripping into the little viles. I'm sure the neighboring patients were wondering why we were cheering and clapping behind our curtain.

Abby truly is a brave soul. I was so proud of her. She tolerated the Gastroscopy procedure really well and didn't need any extra support while being sedated. The GI doc discussed what he saw and explained that her esophagus actually looks a bit better than what he saw last October! I could tell by looking at the pictures he took. He added that just because the esophagus looks better now after 6+ months of J-feedings doesn't mean that she isn't still having terrible reflux. We discussed the Fundo surgery again and he pretty much left that up to us. If her symptoms remain constant and she continues to seem uncomfortable then we should consider it.

The pH probe was placed after the procedure while she was still asleep. Another big praise... one less thing to stress her out. You can see in the pictures the tube taped to her nose and cheek... and notice how cute she looks even with it in!

Poor baby has to have elbow restraints on both arms to keep her from pulling the tube out. The nurses were surprised how quickly she was able to reach for the tube as soon as she woke up. So for the next 18 hrs she will be an unhappy, thumb-less little girl. For those of you who know how much Abby loves sucking her thumb, this is a problem!

After all that excitement we headed over to meet a new doctor added to Abby's list. She was very nice and very thorough! Naturally our discussion was long as we described Abby's history including NICU stay and all the surgeries. This visit focussed mainly on her seizure activity and patterns we've noticed. She increased the VNS settings and changed a few details about her meds.

We got to see the EEG print out while the doctor explained the results. Abby had several spiking episodes occurring in the right parietal lobe lasting several seconds. It is this type of brain activity that produces seizures if it keeps firing for more than 10 seconds. We shouldn't see any clinical signs (or seizure like activity) when these spikes are short lasting, like what we saw on her test. She pointed out 4 or 5 different episodes during the 1 hr test where this spiking was noted. It was nice to get a visual and an explanation of what they are looking for during the EEG. Fascinating but heart heavy information to hear.

As usual, Josiah hammed it up with the nurses. They thought he was funny. He remembered where all the stuffed animals sit on different desks from last weeks' visit!

April EEG

2008-04-21T15:14:00.001-05:00

Today Abby had her first EEG since the VNS placement in December. She was supposed to be sleep deprived for it, so by the time her head was hooked up to all the leads she was pretty grumpy. But as planned, she quickly fell asleep and remained calm for pretty much the whole test (1 hr).

As with most of our appointments, our little supporter and comic relief came along too. He spent most of his time eating and chatting with anyone and everyone who would listen. Today he ate a PB&J and drank his apple juice, occasionally shouting out an exciting new observation. Because Abby was resting during this test and the lights were dimmed, he would frequently turn to me and put his little finger to his mouth and whisper "shoosh, mommy. Abby's night night." I suppose soon they'll be able to do this without me!

On days like today I often wish I had another degree or more training. Today it would be EEG interpretation. As I sat watching Abby's brain waves dance across the screen, I so desperately wanted to know what they were saying. But b/c the technician is sworn to secrecy, we resorted to chatting about meaningless, random topics that you might overhear any strangers talking about. So now we wait to meet with the neurologist who will decode the message for us this Thursday, and hopefully deliver promising news.

We know that the VNS has pretty much taken care of the 'startle' type seizures that she was having 20-30 every day. This is very exciting!

As for the grand mal seizures, they still attack in clusters. Sometimes several in one day and sometimes they space out to include 1 or 2 in a day for a week or so. There is no telling when she will have one except for a brief warning period right before it starts when we notice Abby signing "all-done, all-done" over and over again. Amazingly at this point we can often stop or delay the seizure from manifesting itself fully by using the VNS magnet. This is so wonderful! It doesn't work every time but when it does we feel a wave of thankfulness because we hold something tangible we can use to keep her comfortable.

Next on the list this week:

An upper GI series first thing Thursday morning, which also includes the insertion of a pH probe. She'll wear this home for 24 hours. We are praying it will show the doctor an accurate picture of her reflux status. The last pH probe she had 2 1/2 years ago didn't give us anything to work with.

Abby has also started receiving home-bound services through her school. Due to prolonged illness and crazy fever patterns we have kept her home most of this semester. The OT came last week and we are hoping to see the PT this week. It's good for me to be reminded of what I need to be working on with Abby while she's home. Plus I need ideas on how to keep her focused and entertained. This is my biggest challenge. It's so different than teaching Josiah. He's so independent and playful! He doesn't need my help to have fun. With Abby, I need to be literally hands-on for her to interact with her environment at all. So lately I've been trying to come up with a more creative routine so that I'm interacting with both kids during their waking hours appropriately.

Another area I wish I had a degree in!!!

Rejoice in the Lord

2008-04-18T13:03:00.000-05:00

Psalm 32: 5-11

"Then I acknowledged my sin to you and did not cover up my iniquity. I said, 'I will confess my transgressions to the Lord'- and you forgave the guilt of my sin.

Therefore let everyone who is godly pray to you while you may be found; surely when the mighty waters rise, they will not reach him.

You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you. Do not be like the horse or the mule, which have no understanding but must be controlled by bit and bridle or they will not come to you.

Many are the woes of the wicked, but the Lord's unfailing love surrounds the man who trusts in him.

Rejoice in the Lord and be glad, you righteous; sing, all you who are upright in heart!"

We rejoice because the Lord is trustworthy! He is able. I read this passage at a moment of need, in the dark of night. Lord, help me not be like the mule.

We met with Abby's Endocrinologist Wednesday morning. This individual is always very kind and thorough, asking about all the areas of Abby's health and development. I appreciate that.

We discussed her fevers and the frequent irritability that has become part of her days. He explained about her (known) hypothalamus dysfunction and how that could possibly be contributing to her temperature fluctuations. He also mentioned that she most likely also has a growth hormone deficiency. This could play into the way her body handles stress, especially illnesses. He said it was a good sign that she has been able to fight off infections on her own.

He was concerned with her increase in seizures and her decline in development and general interest in activities. Labs were ordered to check different levels related to the things we had talked about. He brought up her shunt as being a possible culprit. Usually I'm not concerned about a shunt infection, but remembering that she did have surgery near her shunt in December made me worried. The risk of infection is there.

We are waiting for our pediatrician to help set us up with a good "sticker" at the hospital, in order to spare Abby any unnecessary pain. Most likely he will order additional labs to check for infection also.

I'm slowly learning to give everything up to the Lord. It's difficult not to worry, but I know He is able.

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

Ephesians 3:20-21