Vistors from the North

My parents have been here this past week. They arrived on Christmas Evening in time for dinner and left just this morning. It was a fun-filled week, with playing, shopping, walking, eating good food and the like. They will be missed here until next time.

My Little Lady

After facing a hard realization that her hair would never be "as long as Rapunzels", in the true spirit of the movie Tangled, got tired "of always having tangles". After a discussion of a possible solution to the problem she resolved she "wanted short hair". We looked at some pictures, and she settled on this do. I got my shears out and a good U-tube video and got to work. I was so thankful it turned out so cute. I had plan B in order, we were going to head to town and find a salon, but no need it frames her darling little face perfectly.

Merry Christmas

Merry Christmas friends! If I had gotten around to sending a card it would have had this picture on it, but I didn't so here's a Merry Christmas Post.

It's beginning to look a lot like Christmas

I've had such fun celebrating advent with the children this year. It has really been refreshing to anticipate the birth of Christ in this way.

I've been thinking how amazing it is that God's people were waiting for their savior all that time and then................... HE CAME!!!! What a blessing to be alive after the coming of our Load and Savior. I'm so thankful!

On another note; these are festive I thought.

The children decorating.

Hosea's handy work.

The final touch.

We call this our redemption man tree.

Cardiology all clear

We saw the cardiologist today since her new muscle diagnosis can affect her heart. She had an Echocardiogram and EKG of her heart, and everything check out good today. They will follow her annually to check for changes. I am thankful for a good report.

Silliness

Mike and I went to an ugly sweater Christmas party for his squadron. We won the contest! It was a loudest cheer crowd vote of about 50 people. We are so proud of our dressing up skills:)

Rolling

Yesterday Aggie did several rolls from her back to her tummy! Very exciting. Before she would do one here or there, but hasn't since surgery. She did several yesterday and again this morning. I am so thankful to God for this little step of developmental progress. She only has one direction mastered, but is working on the other. Just thrilling, that's all.

A good word

Quote from Stepping Heavenward by Elizabeth Prentiss.

If only my attitude matched this daily.

"Here's a sweet fragrant mouth to kiss. Here are 2 more feet to make music with there pattering about my nursery. Here's a soul to train for God, and the body in which it dwells is worthy of all it will cost, since it is the abode of a kingly tenet. I may see less of friends, but I have gained one dearer of all of them. To whom while I minister in Christ name I make a willing sacrifice of that little leisure for my own recreation my other darlings have left me. Yes my precious baby you are welcome to your mothers heart, welcome to her time, her strength, her health, her tenderest cares, to her life long prayer. O how rich I am, how truly blessed."

Mikes head all clear

Mike had his MRI yesterday and saw the Neurologist today. He looks good in radiology terms. He's been having exertion headaches and migraines. They plan to "break the headache" with some medication, he hasn't been taking anything. Then he could be back in the cockpit as early as next Thursday. Thankful for a happy ending.

My Babies

We took the kids to an old local mill last weekend to try and get some nice photos of them for the grandparents, and us. I was thankful we got a few good ones, some patience and determination paid off.

Hosea was himself, a ball of energy. Smiling was not a chore for him, but catching him not in motion was a trick, the kid had ants in his pants. I had many blurry ones.

Shiloh has learned the art of the fake smile, and capturing a real one was the most difficult task of all. But alas one came.

Aggie was the most cooperative, she was thrilled to have everyones attention all at once.

Tacky Christmas Attire

This year I've been invited to two Christmas parties where the instructions are to wear "Tacky Christmas Attire". The first was a girls only party and it was a blast. I got 2nd place, thank you local thrift stores for making this possible. This Sat. is #2, and Mike will be joining in on the fun. I don't know why dressing up is so exhilarating, but it sure does bring out the silly in me. Mike allowed me to leave early for the party so I could finish up some Christmas shopping, I wore my outfit to 4 different stores and the looks and comments I got were quite amusing. I would get back in the van and chuckle. He he!

Trip up North

Just some fun Pictures from our trip earlier in the month.

The Aquarium

The children's request

It was so nice to see beautiful Fall colors.

Grandma took Shiloh to the American Girl Doll store in Chicago and Shiloh picked out her Christmas gift. She picked a lovely Hawaiian girl with beautiful long hair.

We also played in some leaves at the grandparents house.

I was thinking......" that's not right"

So I was thinking on Monday I wonder when Mike's MRI would be? Then it reminded me that no one ever called about Aggies MRI. Then I thought........ that's just not right that two people in our home need an MRI..... Geesh!

Now that I have your attention. Last Sunday Mike got sudden intense headaches with exercise on two occasions, so sever he thought it wise to stop. He has never really gotten much of a headache, so naturally this was alarming enough for us to think going to the ER would be wise. He had an CT, which ruled out an aneurysm and tumor. The MRI was closed, (which shows a clear picture) so they decided to schedule it for later, (thank you military hospitals). The MRI will rule out a slow bleed in his brain. I'm not a doctor, but it's not looking probable that this is the problem b/c he would probably be dead by now if it was. They told us today, 5 days after the event that his MRI will be next Tuesday, 9 days after the event. He is not allowed to exercise, an of course not allowed to fly. He will have to get the MRI, see a neurologist and then get cleared back to flying by a special flying Dr. made for such permissions. As alarming as this may sound to some, i think it has not caught us off guard in that way at all. I find myself thinking "really?, OK... whatever". Since sunday we've had a kiddo with a fever that is now gone, and a totally different one vomiting, which has ceased. I had the same thought as previously stated with each episode. I am finding myself struggling with bitterness/resentment. I'm totally over all this medical drama that seems to follow us. I am trying to think of things to be thankful for, we have so many, and be characterized with contentment, but truthfully I'm finding myself a bit feisty. I'm really wrestling with my sin. I know in Christ I am not hopeless and victory is mine, but not responding to my feelings and responding in truth as been difficult.

Happy Birthday Hosea!

He's 4!

Happy Birthday you crazy little man!

A new diagnosis

We saw the neurologist today. He had the results of the muscle biopsy. He did confirm that it is not a mitochondrial disease. Still good news! She does have a new diagnosis called congenital fiber-type disproportion. Click on link for extra details. Basically muscles are made up of 2 fiber types. Type 1 is fast twitch fibers and Type 2 is slow twitch. They do what one might think, the fast ones help with quick movements (i.e.. reaching out and grabbing something quickly) and the slow ones help with prolonged strength (i.e.. standing up for a prolonged period of time). Aggie has mostly quick Type 1 muscle fibers, hence the disproportion. So marathon running may not be a good activity for Aggie, but perhaps the 25 yard dash is still an option? :) The treatment is therapy, which we are doing. Also we will see yet another specialist, Cardiology. In less than 10% of patients with this disease the heart is affected. So it is necessary for us to get a "baseline" of Aggies heart and have someone follow her for that. The other person who she should be followed by for this new diagnosis is opthamology b/c eye weakness is common, but we already see them so we are good there. Glad to have a check in the box. Less than 10% of patients with this disease are from a genetic root. We will see the genetic Dr. in 6 months and see if this changes her course of action.

We also saw ENT this afternoon for a follow up on the ear tubes, they are doing fine.

So to recap on all our diagnosis:

Periventricular Leukomalisia- brain injury

Sensorineural hearing loss- moderate in both ears

Congenital fiber-type disproportion

Diagnosis are mostly helpful for insurance purposes, but also good for anticipating any future care that may need to be anticipated.

In the mean time we are looking forward to staying home for the holiday's and having a restful, yet fun time with our precious little family.

Genetics

We saw a new Dr. Thursday. A Genetics Dr. She was nice, she use to be a neurologist, but switched to Genetics. She is doubly helpful for us. She looked at Aggie's old MRI, which I had with me, always a hard thing for me to look at since much of her brain is missing or damaged. I'm no radiologist, but just looking at it you would naturally think, "that's not good". So I keep it stored away in my growing binder for times like Thursday, it usually takes me a few days to stop seeing IT and look at what is actually in front of me, a sweet, lovable cute little girl, a gift from the Lord.

The gist of what the genetics Dr. said was this, it doesn't look like she has a genetic disease based upon some past labs and the MRI and her "clinical appearance" aka. how she looks. She said, "What it looks like happened is her brain never fully developed and was damaged at some point in-utero. So her condition is "static", (not getting worse). The damage is done, now we just have to wait and see how she handles it." I was thankful for her frankness, no one has really just come out and said that, though it's been implied by logical deduction. This was bittersweet for me, b/c on one hand I though, "great it's not getting worse, and therapy can be helpful, and with God all things are possible." My other thought was, "what did I do during pregnancy to cause this?" This has been a big struggle for me this week. I know what God's word says in John 9:3 "It was not that this man sinned, or his parents, but that the works of God might be displayed in him." I believe God's word to be truth, but what I know is true doesn't always penetrate my heart at the same time it hits my brain. So I am praying in faith that God's works might be displayed in Aggie.

The plan for her is; she will need another MRI since it's been about a year since the first one, to look for changes. We will see the genetics lady again in 6 months, there may be more labs done at that time? I think for us the plan is, after we get this MRI done and see what it says we would like to start retreating from the Medical community as much as possible, and start living our lives apart from them, like most normal people do. We will still go for check-ups here and there, but would like a break from all the testing and such. We will still do therapy of course. Time will tell what the Lord has for Aggie Rae.

Muscle Biopsy

We got the results of the Muscle Biopsy today. Unfortunately the Nurse Practitioner that we saw was unable to explain them to me, but at least I was able to read them and what I could make of it was good news. I assume the Genetics Dr. we see tomorrow will be able to share more detail, and if not her, then we see the Neurologist on Monday, and he's the one who ordered it.

Soo... here is what I know. The muscle fibers were not "red ragged" fibers that would indicate the mitochondrial disease. They did show signs of "hypotonic muscles" or low tone in the muscle, which we already knew about Aggie. Physical strength is not likely to define her. The best news of all is that "it does not seem like a progressive problem". Wonderful News!!! Whatever IT is, it is not likely to get worse, which gives me great hope for Aggies future development as we continue therapy. I praise God for this wonderful news!!

The Trip Part 1

First we stopped at Grandpa Tim's house.

Then we headed to Grandma and Grandpoo's house. The kids got to play in the leaves, which is not something our Florida yard offers.

Then we headed to Chicago to celebrate Mike's youngest brothers navy boot camp graduation. Strong work Aaron!

Mike stole me away for a night on the town. We saw a play and had a nice dinner. What a sweet birthday gift. Thanks for watching the kids grand and great-grand parents.

Ears

Aggie's surgery went well. She officially has tubes in her ears. Which is suppose to help with decreasing the number of ear infections, she's had 8 or 9 since January, I lost count. She also had a repeat hearing test. It showed the right ear still has moderate loss, but the left ear may be a bit worse and they are considering putting an aid on that ear as well. She will need to do another little test in the office to determine this.

She handled it all in true Aggie style, with grace. She was a little fussy the day of, and woke once in the night, but a little tylenol and snuggles helped with that.

She is her sweet spunky self today, so thankful for that. I am also very grateful to not have any more scheduled surgeries on the books.

Next week we will head to Birmingham to the University of Alabama to see a genetics Dr. On Thursday, not sure of what date that is off hand. I think we have 2 other appointments also, but i'm not getting up to look in the planner to see what they are right now.

I'm looking forward to some rest tonight.

Phew, we made it!

We made it home tonight.

I had an eventful 30th birthday on a "long van ride", 9 hours about.

Soo thankful to be home.

Tomorrow Aggie get's tubes in her ears, a little outpatient procedure.

The 11th will be Hosea's Birthday Party, a bit early since he was born on the 28th, but it's really the best weekend to do it. He can't wait, and he won't have to.

After I get my feet under me, i'll have to post some pic's of our trip, but there are a few missing as the camera decided to have a memory problem and didn't save most of the chicago ones, then we had a temporary loss of the camera. Then we found it, and took some pictures on a re-formatted memory card.

It was so lovely to get to see some colorful trees on our trip North!

Ohio-Chicago

Friends, we are traveling again.

Aggie's tear duct probing on monday went well. She's a trooper!

We hit the road after the procedure headed to OH. We went to see Mike's dad, then to see his Mom, Ron and family. Now we are in Chicago, his youngest brother graduated from Navy boot camp today. I'm standing my post in the hotel room with my little people. We did head to the pool this morning and the park this afternoon.

Last night Mike was sweet to buy us tickets to a play for a little early birthday gift for me. We went out to eat at a nice restaurant afterwards The Grand Lux Cafe. It was a lovely time for just the two of us.

Sweet red pepper and gouda soup

• We love this! Probably our favorite, and with Fall upon us it's perfect. I serve it with the Rosemary Bread I posted a while back, I love to dip it. You girls make some mean bread, so I'm sure your loaf of choice will be just as yummy. I also usually double the recipe so are little family can get 2 plus meals out of it. Mike and I eat at least two hardy bowls full per meal. Enjoy!
• Sweet red pepper and gouda soup
• 2 tablespoons unsalted butter
• 4 red bell peppers, chopped
• 1 onion, chopped
• 4 garlic cloves, minced
• 24 fluid ounces chicken broth
• 1/2 cup heavy cream
• 1/8 teaspoon ground black pepper
• 2 cups shredded gouda cheese

Directions:

1. 1
   Melt the butter in a large saucepan over medium heat.
2. 2
   Place the red bell pepper, onion and garlic in the saucepan and saute for 15 to 20 minutes OR until tender.
3. 3
   Pour in the chicken broth, stirring well.
4. 4
   Reduce heat to low and simmer for 30 minutes.
5. 5
   Transfer to a blender and puree until smooth. Do this in batches as necessary depending on the size of your blender. Be careful not to overfill your blender. I do a little less than half full. I did it to half one time and regretted it, the pressure from the heat plays in. I always put a kitchen towel over the blender just incase the lid isn't as secure as I think. I messed this step up twice. Both times it was messy, one time it was painful; hot liquid all over my arm.
6. 6
   Return the liquid to the saucepan over medium low heat.
7. 7
   Stir in the heavy cream, the ground black pepper and cheese, and allow to heat through about 5 to 10 minutes.

Read more: http://www.food.com/recipe/sweet-red-pepper-and-gouda-soup-436946#ixzz1c7jAAdCp

Fear... Worry ... and the like.

It's time to be real, honest and vulnerable.... In story form, my best way of communicating.. So read on about fear grace and redemption in my own life.

It all started a few years ago, I suppose it started long before that, but for this narrative we'll say a few years ago. We were praying for a woman who had lost an infant to SIDS... How terrible i would think, my heart ached for her. We were not just praying for her peace and comfort, but this women was struggling in her faith. Tempted to fall away from Christ not understanding how such a dreadful thing could have happened to her baby? In my heart I fully understood her struggle, it doesn't mean it's right, but I could relate with her. I had prideful thoughts like "if God ever messed with my babies I don't know if I could pull through in my own faith". After all my children were so dear to me. I loved them so much it ached to empathize with this situation. And that was the root of my fear... "Lord if something terrible, unusual or painful happened to MY children....would you keep me, would I still be yours?"

When I became pregnant with Aggie all was normal at first, a couple moves, a late working husband, nothing too outstanding. Pressing on. But as my pregnancy progressed I became aware of something different, it wasn't fear.... God's spirit prompted me to pray for Aggie, ...... for her healing........ even then in my womb... When we chose her name Aggie Rae, I knew something was going to be different about her. I would plead with God to remove this burden from me at times. When Aggie was born, and all seemed to be so "normal" with her I was almost surprised. She nursed well, did other normal newborn things and we headed home from the hospital in a timely manner. It wasn't until she was a few months old and not meeting developmental milestones that all my thoughts and struggles came flooding back. I would sit in her room nursing her, praying yet again for God's healing touch in her body. One night I specifically remember prior to any diagnosis, knowing something was wrong in her head... I pleaded fervently for the Lord to repair any damage.... essentially asking Him to remove this "cup" from me. In 1 Pe 5:6-11 Gods word told me what to do, humble myself and cast my anxieties on Him, who cares for me. And so my casting begun. I had to say "ok Lord I lay her at your feet to care for, she is yours, she was a gift to me to watch over for a short time here on earth, but she belongs to you, and I know you, her creator, will take good care of her." A few months after that Aggies brain damage was confirmed via MRI, about a month prior her hearing loss was also confirmed. Once we had all this medical information I found myself wondering.... what does this mean for her life. I was longing for a list of things she will and will not be able to do. But no such thing exists, and no Dr. wants to give it a shot. Because the truth is everyone's body responds differently to these situations. As I grappled with the unknown being given to fear and disappointed hopes for my little one, I found myself again crying out to my God and laying her at His feet for His great care. This past week has been another reflection of that sin lurking in my heart, the worry and fear is truly my pride saying, God I can handle this situation better than you. I need to figure this out and make it happen the right way. I care about my circumstances more than you do.... My attitude of worry communicated these things to the creator of the universe, my creator, Aggies creator. I was thinking how long do we need this feeding tube? What if she needs it the rest of her life? Will she ever eat normally again? Lord I do not want this for her! I had to repent of my sinful worry, knowing that God knows best and that "after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you." 1Pe 5:10-11 Aggie may never overcome her physical limitations here on earth, that's why our eternal soul is such a treasure. Our life here is "for a little while" it is "a vapor", but the life to come is eternal, never ending..... That is where our hope for Aggie is, that's where my hope is, it is in heaven with Christ my redeemer and savior. Many people have said things like " I don't know how you are doing as good as you are?" Or some question the goodness of God when they see hard circumstances. But the truth is when God created man in the garden all was perfect and right, no disease, no sickness, no sin. Until "the fall of man" when Adam and Eve disobeyed God sin came into the world and our punishment of death accompanied by sickness and famine. This is why Aggie was born the way she was, she was born into a fallen world, not Eden. Psalm 139 says clearly that " God formed Aggies inward parts, and knitted her together in my womb. She is wonderfully made." God knew what He was doing when He created Aggie and placed her in our home. He is sovereign over all things. But it doesn't end here. God made a way out of this fallen, sinful world. If we place our faith in Christ by the help of His spirit we can overcome death through Christ and live eternally in heaven with Him. And this is "how I've been doing it". Instead of falling away from my faith (which was my biggest fear), my faith has been strengthened as my savior Christ has given me faith when I had none. He has been my sufficiency when I am lacking. And holds me up when I am falling... HE has kept me! I am HIS.

Souvenirs

Or maybe gifts..... perhaps handouts....? If we had paid... souvenir would fit. But we didn't.

This little jewel was a minimum of $500. Since we need it, I'm thankful to have it.

Miscellaneous suppilies, I need to organize and find places for our new booty. Replacements will be delivered to the house monthly.

This is the frequent flyer station. Though becoming less frequent than it once was. But still frequent enough to pack it in the diaper bag when leaving the house. I left without it one day, that was a mistake.

Here are the war wounds. This is right before her first bath.

I know I've mentioned Aggie not eating so well. This is still true, but instead of being sinful and worrying or fearful, I've laid it at the feet of the Lord and I trust in His care. For those of you that like specifics or are quantitative people here's the facts. Aggie needs, according to the hospital nutrition department, 22 ounces of 27 cal/oz formula every 24 hours. Our goal is to get her to take as much of that orally as possible. Now..... Aggie drinks formula still, but she much prefers food, can you blame her? So we count every 30 calories of food as an ounce, we round of course. This is difficult when I make her food, we guess as best we can..... Any who..... So today she took her top number of ounces in one day which was 13.5, still a far cry from 22, but closer than yesterday. The last few days she has managed to increase about an ounce a day. Then at night we set her pump to give her 7 ounces over a 10 hour period to make up for the losses. So if you are praying for specifics for our little Rae, this is an area that we hope to see the Lord work in.

Update

We are home, getting settled. My parents left Sunday, it was so nice to have them while they were here. I'm learning how to juggle our new feeding routine with my other responsibilities. We've started back to therapy this week. OT and speech yesterday, PT today. They of course are taking it easy on her, but it's good for her to get some things in. Aggie is still not eating well, but I am sure her tummy is still a bit sore, and probably swollen inside. Her temperament has been sweet as usual. God continues to grant us grace to do what we are called to. I've had some sweet friends bring us a meal or two. And Mike's squadron has also started a sign up list for a few meals. This is such a blessing to me! Very sweet!!!! And helpful to boot. I am finding myself feeling a bit tired toward the middle and end of the day, but I am thankful to be able to work hard through the day, and hit the pillow at the end. The hospital called me yesterday to "see how our stay was". I politely and vaguely recounted our pre-op experience, and noted a need for patient teaching upon discharge. There was a return call about 10 min. later wanting more details, someone new. I gave a as-mater-a-fact as possible answer, trying not to be sinful in my response. Today they called to let me know that the hospital has decided to buy another set of small laproscopic equipment so that in the future an infant will not be waiting 8 hours in pre op for the equipment they need for their procedure. So I am glad something good came of our less than ideal experience.

Home

We made it here!

I have work to do.

Adjusting to happen.

Kids to love.

Food to cook.

Chores to be done.

Good to be home.

New Trick

In our time in the hospital I taught Aggie to give five. We've been working on it for awhile, but she actually got! So cute! I'm thrilled!

4.5 in Pictures

She's feeling better.

Watching baby Einstein.

Mema and Papa visiting

Kids presenting cards. Shiloh said "it says come home Aggie". Hosea said "it is a picture of Aggie sad".

My parents have been here all week taking care of the big kids they have been a HUGE help! Thanks Mom and Dad!

Part 4.5

A little mid-day update. Aggie is off the "vent and rack", we will only vent her g-tube as needed now, even at home. Tonight they will try feeding her through her g-tube to see how she tolerates it, if all goes well we will head home tomorrow sometime. We've held her several times b/c the only thing she's attached to now is her IV. She's still not eating super well, but I guess that's the beauty of the g-tube. I did give her a bed bath today, she screamed. Good for her lungs. She's been watching some baby Einstein and enjoying it and I taught her to give a high-five, which was pretty exciting since she only has a couple tricks. It just encourages me that even though her brain is not "normal" it still works. And along those lines, she had a well check the day before her surgery and her head had grown much more than anticipated! Such a blessing!

Surgery Part 4

The last 24 hours..... let's see. We started yesterday off with feeding. She had a little bit of pedilyte, then a little of formula, then we tried some baby food. She had very small portions of each before she was tired of it. Her biggest meal was last night 1.5 oz of formula and 1/2 jar of baby food. This is what we will be working on today, just getting her tummy to handle more food. Her G-tube is ordered to "rack and vent" right now, which makes holding her very difficult. This morning it seemed like she was sick of lying in bed. Yesterday she sat in her bouncy seat for a while, but it basically holds her in the same position as the way she's in bed, which is for the "rack and vent" process. Last night I got a bit more sleep then the night prior, I think i was only up about 5 times, which allowed me to have a series of 2 hour naps in-between interruptions. Much better, but still finding myself sleepy this morning. When Mike arrives I'll go take a nap again at a friends house.

On other news the older children had a soccer game last night. I'm told that our Shiloh played goalie and actually stopped the ball 3 times. This is pretty amazing considering her very feminine nature, and the fact she basically danced around the field hugging all her female teammates up to this point. I can barely picture it happening.

Surgery Part 3

By the way, I'm loving the free WiFi at the hospital.... brilliant! We had a pretty eventful night, there was someone in here at least every hour. The morning sleepiness reminds me of how one feels after having a new born infant who doesn't eat well, minus the sore bottom of course. Aggie got morphine every 2 hours to keep her comfortable. I think today we will start cutting back on that a bit. She is also getting tylenol every 6 hrs. She elected to remover her own NG tube at about 3am, despite my efforts to prevent it with gloves and blankets. It was suppose to come out at 6am so thankfully they left it out. She had her first bottle of pediltye this morning, she took about 1/2 an ounce, and was done with it. I also got to hold her for the first time this morning, I read her a few books and cried. She seemed pretty uncomfortable so I put her back to bed and she fell quickly asleep. I've been very thankful for her temperament, God has been answering our prayers. We were told that when the sedation wore off she would be like a "bear". She did complain on and off between dozing, but definitely not bear like. She's been much more content since the NG was removed, it was gaging her quite a bit and she couldn't have any liquid in her mouth. She has had some moments this morning where she seems like her little self instead of giving the 10 yard stare, she gave me a good morning squeal with her horse little voice. Very sweet. She's not staying awake for very long, just about 5-10 min. at a time. I would prefer she sleep though as much of this yucky part as possible. A friend brought me coffee this morning, and Aggie smiled and waved hi to her, so precious! After Mike arrives today, I'm headed to a friends home who lives close by for a nap. God has been providing for all our our needs!

Surgery Part 2

Obviously we've been reunited with our little doll. As you can see, things aren't so fun for her right now. She has 3 small incisions on her tummy, plus the g-tube site. Then her left thigh has a wound from the muscle biopsy. She is pretty fussy on and off and taking little cat naps between nursing interruptions. She will have her vital signs taken every hour until midnight, then every 4 hrs after that. She is getting IV fluid for nutrition for now. She has a nasogastric (NG) tube in her nose to her tummy on suction to keep her tummy dry, which is suppose to help the healing process. Our main struggle right now is keeping her from pulling at the NG tube and IV, she insists that she is "ahh daaa" (all done). Can you blame her. I put a small glove on her one free hand, it was being the menace to the tubes. The other hand is secured very well to protect her IV. Tomorrow morning the NG will be removed and she will get a bottle of pedilyte, and we'll see how she tolerates that. Diet progression will depend upon it. Well I'm going to catch a 30min. nap before the nurse is back.

Surgery Part 1

Soo..... I'm in the waiting room, Aggie's in surgery currently. It's been a long time coming, on more than one account. Of course there was the cancel and reschedule, but this morning/afternoon was a bit of an adventure as well. Her surgery was scheduled for 830 with a 630 show time. Once we got a chance to speak with the surgeon, we learned that she was planning to do more surgery than we were previously informed of. She told us that Aggies gastric emptying scan showed that her tummy was not emptying at a normal rate and that she wanted to correct that as well. This would mean and "open" surgery opposed to a "laparoscopic" surgery. Which would be an incision from her sternum to her navel. It would also mean 4 days of no eating, and at least 5 days in the hospital. Quite a change from the 24 hr. minimum we were given. Naturally I started asking questions seeking to understand fully the plan. Thankfully the Lord answered our prayers asking for wisdom with the words " last I knew her gastric emptying scan was normal, this is all new information to me, how slow is it emptying?". This prompted the Dr. to request the report so we could go over it. To her surprise and my delight, Aggies gastric emptying scan was normal!! So this means back to the old plan. The only problem was that the hospital only had one set of laparoscopic equipment small enough and it was currently in use. This lead to a wait......... a 7 hr wait. Aggie last ate at midnight, thankfully I woke to feed her a bottle, her last meal if you will. God was so kind to answer our prayers as Aggie was sweet and peaceful most of the time. She did give us a few complaints, but considering she hadn't eaten for 14hrs. she was a gem. Our pastor and his wife came and waited with us during this time through lunch, it was a sweet time of fellowship. So God in His goodness has woven His grace though this day, which has been nothing I would have expected in a day, but with His intricate fingertips all over it.

Nerves

I'm a ball of them. Pray for me. Especially lift up Aggie Rae for her surgery tomorrow. This day has been full of........fullness. Aggie's "well check" this morning. On a positive note her head grew in circumference. She also has developed a healthy fear of medical staff, can you blame the poor girl after all her test and labs, this is sad for sure, but good b/c it is "developmental". Shiloh needed to see the Dr. this afternoon for a "tummy ache" that's been lasting a few weeks that is actually an ear infection..... craziness! My parents are coming tonight to help-out with the children for our time in the hospital, they have really gone out of their way to serve us, such a blessing. We have soccer practice tonight, that should be fun. Then I need to pack Aggie and I's overnight bag for our hospital adventure tomorrow, we need to arrive at 630 am for an 830 am surgery time. Ok...... I need to start dinner, roasted red pepper and gouda soup, yummmmm!

Field Trip

(See the airplane flying under)

One thing we've done while we've been visiting my brothers family is, I took the kids to see the Arch on Friday while the other kiddos where in school. It was a field trip day for us!

Here they are looking out of the top of the Arch.

Here is a little art on the lawn during our picnic, self-initiated by my smart kindergartner.

A little P.E. chasing butterflies.

Looking for purpose in the wrong place.

Eyes

We saw the pediatric opthamologist today. Aggie had some pigmentation on the back of her right eye that needed further investigation from a couple months ago. The conclusion is this; she has some "hyperpigmentation" commonly known as "bear tracks" which presently appear to be benign. She is slightly far-sided, but not enough to need glasses. Her lacrimal ducts are clogged, which we knew, however this Doctor is recommending that they be probed to clear them. Which would be another sedated procedure. With two on the books already, I'm not feeling too eager about this. On a positive note; this was Aggies 3rd eye exam and by far the best she's tolerated it. Praise God for hearing my prayers and answering!

For now

Well, this week has been a little different. My parents are here visiting, they made the trip to help out for the surgery that was a no go, so we still got to enjoy some time with them. We've kept busy with soccer, the kids had their first game today. Hosea basically runs in circles the whole time and Shiloh skips and dances across the field. Neither one show much interest in actually making contact with the ball and would prefer to get out of the way of the herd that surrounds it:) They seem to be having fun, getting exercise and enjoying time with other children so we will continue.

Next week the kids and I are headed to Missouri to stay a week with my brother and his family. I'm looking forward to some time away.

Surgery Rescheduled

We found out today that Aggies surgery has been rescheduled (Oct. 12). She had some pre-op labs drawn Friday and they indicate an infection, which is probably from an ear infection that was treated last monday. The surgeon did not feel comfortable proceeding with her WBC count being high. Her pediatrician saw her today, and says she looks good, but is putting her on a preventative antibiotics for 2 months until both surgeries are done (tummy and ears). I am struggling with frustration and accepting the Lord's sovereignty over this. I really wanted to get it over with! But I know that He is in control, I wish my initial feelings and thoughts reflected this truth.

Packin' it on!

Aggie gained some weight! She is tipping the scales at 16lb. 11oz.

(Here she is being big)

Sentences worth documenting

A couple weeks ago Shiloh and Hosea were outside hunting down a lizard we saw on the back window. They found him and managed to scare him up the side of the house near the roof. I'm watching out the window, a short dialog took place between them and they both sprinted in the back door straight to Mike and I. A winded Hosea says, " We had to hurry up and run inside before the lizard jumped on our head, ate all our hair, and gave us a haircut like daddy."

Today I packed a picnic to go to the park, the weather has been beautiful! We were setting at the picnic table and Shiloh is looking at her PB and J, and says, "sandwich........ like sand....... and a witch..... that doesn't sound yummy at all". I have to agree, she has a good point.

Blessing!!

At occupational therapy Aggie rolled over from her back to her front for the very first time!! This is very exciting, as it is a key step to her gaining some mobility. I think she did it to try and get away from the therapist b/c she doesn't like her arm stretches. She was telling her "ahh da" which I think is her version of all done. I love seeing her have preferences and opinions about things. In this case a strong opinion is better than no opinion at all.

Sitting up!

Saturday Aggie sustained a good independent sitting up session for several minutes to play her favorite game of "catch". It's such a blessing to continue to see progress. She is also manipulating some of her toys more, she likes spinning things.

Feeling the Need

This week has been a little on the rough side for me. I've been in the throws of the new schedule for 3 weeks now, and am finding that time I once devoted to chores is by natural priority being devoted to 1. therapy 2. school 3. dinner. Then the next thing I know it's 9:00 and I am wishing I had hit the pillow at least 30 min. ago so that I might feel rested to do it all over again. My man bailed me out Saturday and helped me A LOT!! Thank you beloved, you have served me well!

Exhibit A: 10 loads of unfolded laundry (the only exhibit that I dared to take a picture of)

Additionally the last 2 weeks I have been coordinating with 2 Doctors to capitalize on Aggies up coming sedation for her tummy surgery. The neurologist had mentioned getting a muscle biopsy which is the only test that will confirm a mitochondrial myopathy. Her blood test came back negative, which essentially tells us nothing since it does not rule out the disease. (What I tell you next was my mothers idea, she's very smart!) So I called the neurologist and told them Aggie was going to be sedated soon and if there were any more labs or tests they were wanting that I would prefer then do it while she was already asleep. I specifically mentioned the muscle biopsy since at her last appointment they mentioned that would probably be the next step, but chose not to see her again until November to make that decision, frustrating! Anyway to make a long story short after 2 weeks of calling people, leaving messages, and following up on messages (aka. being a squeaky door) it was finally accomplished, Aggie will have a muscle biopsy also on September 21st. This is bitter sweet for me, as I earnestly want to know if our baby has this disease and don't want her to be sedated again for it, she shows many symptoms of it and an early diagnosis just means early intervention. Unfortunately it is a genetic disease with no cure, and all the treatments are based on correcting symptoms. It is a pretty icky disease to have. Additionally if this is what Aggie has, because it is a maternally inherited genetic disease, it means that I probably have it too and to this point in my life have had very mild or no symptoms. This has been a very sobering reality for me to swallow. Now I don't want to say "what if" in any circumstance, b/c the Lord gives us the grace for one day at a time. For a Dr. to test for the same disease twice, does show they think it is very probable that someone has it. This news has caused me to fall into the sin of worry, i cried all day on and off Thursday. I have since repented of my sin. Mike said something that really hit home for me. "We know we need a savior, but sometimes we FEEL our need for a savior, and that is a sweet place to be, because in Christ we have one." I'm sooo thankful for my savior!!!

Sickness, ugh

Well after 4 weeks and 3 days of cough and congestion and a variety of treatment; perscribed, herbal, over the counter and other wise, I went back to the Dr. I was last there about 10 days ago(at the 3 week of symptoms mark) and was treated for "allergies" which I have had my whole life, and was certain what I was experiencing was not allergies. Why would I go to the Dr. for that? I saw someone different this time, which happens with sick call at a navy clinic. The person who saw me said "oh you poor thing" on more than one occasion. So I am proud to report I am being treated for a sinus infection and an ear infection. I'm not proud b/c I have them, but rather that I'm being treated! I'm really looking forward to no more headaches, night sweats, being able to hear properly, decrease mucus production and no more cough, etc. The thought of wellness overwhelms me to nearly to tears. Mike is flying late tonight, so it will be a date with the dishes and early to bed for me.