Salem's 1st Birthday

Happy Birthday to our little darling girl. I'm telling ya, I love that squirrel! I think of those sweet cheeks and just want to gobble her up. She is growing into her little personality. She is a thinker, and LOVES pushing buttons, especially if it turns the TV or DVD player on or off. She is so content to crawl around the house and explore most of the day. She will periodically stop crawling and stand-up in the middle of the floor (just so we know she can) then resume activity.

Salem's Birth Story

A year ago today the Lord placed Salem Ann (whom we’ve lovingly dubbed Salem-ann-der) into my arms. I’ve desired to document her birth story since then, but today is the day.  To start you will need some background information.

I had asked my parents to come a week prior to her due date. Since our latest born child Hosea, was 2 days early.  The girls were even earlier. I felt a week was a good amount of time to play it safe. It was also near Christmas time, since her due date was December 24^th.  So I was highjacking the grandparents (mom and dad) from all the other family members during the Christmas holiday. As fate would have it, my older brother Ben and his family had decided to travel to Missouri from FRANCE, while mom and dad were waiting on ME to give birth. They were at mom and dad’s house while they were not there. I felt terrible about this. So I arranged for an induction to be done on the 22^nd. So mom and dad could get home to see my brother before he returned to France.  But my mother and Mike talked me out of the induction, as they both though I would prefer to labor naturally and they didn’t want me to be so accommodating in this situation. So we all waited around for little Salem to arrive. I felt so stressed out, because I truly did want mom and dad to get to see Ben. We waited….and waited…. And waited… on the 26^th, I phoned the doctor to re-schedule the induction.  Having so much attention on me was really difficult and added to the stress. Of course all my sweet friends would tell me to “relax, baby won’t come until you relax”. Then I grew anxious about my inability to relax. I was a ball of nerves people. What a mess!

I got the induction re-scheduled for the 28^th.  Mike and I woke early in the morning, drove through What-a-burger for an egg sandwich and checked in the Navel Hospital Pensacola. We got situated and turned on the history channel. We watched how all sorts of unusual foods were made, all morning. It was so relaxing. I receive cyotec, to dilate my cervix around 7 or 8, and my body started contracting and hour or two after that.  We continued to watch the history channel as the contractions came on closer and closer.  I was starting to transition, the TV needed to be turned off, and asked to be checked, she said  “5”, I thought that was very odd, because I was pretty sure baby was coming soon. I had one or two more contractions and asked to be checked again. She said “10”, that’s what I thought. The urge to push was there, no doctor in sight.  Mike moved to the foot of the bed, as he’s seen and heard how this can go.  The nurse quickly got gloves on, the doctor was called, she was down in the clinic. I pushed, baby was on her way, nurse caught her, baby was out, doctor walking in the door.  The doctor scolded me in some sort of fashion, and noted “that was quick”, I returned some sarcastic statement about her timing. Still not sure if she appreciated my jest.  All the post birth aftermath took place. And that was that. Her arrival was at 12:54 pm. Salem was a great eater from the first attempt. She knew just what to do. I was so thankful for all the answered prayers that came with that little bundle of joy.  During her pregnancy I prayed and asked God for everything I could think of that would make the transition from 3 children to 4 as smooth as possible and I am so thankful for the mercy He has shown to me and answering so many of my small particular requests.  So thankful to have a God who hears our prayers.

My stay at the hospital was very short, we left around noon the following day.  They seemed to think I had it under control.  I was a little disappointed that our “baby-cation” was so short lived, but also thrilled because I wanted to send mom and dad on their way. That following morning I was taking Salem’s pictures. I had packed a black blanket and a cute little knit santa hat a friend had given me and wanted to get some newborn shots of her while it was still just her and I. A doctor came in while I was doing it, I’m not sure if it was my doctor or her doctor. She asked if I was the mom? I replied yes. She stated that it looked like we were good and would be going home soon. I’m still not sure what her initial intent of coming in the room was? No one got checked. Just a funny memory. Any way… we got home, mom and dad left the next morning. They did get to see my brothers family for a few hours the evening prior and the morning of their departure. I’m glad that got to see them!!! I mean…..they traveled all the way from FRANCE!

November 2013 Photo Summery

Thanksgiving and Birthday Friends watching Charlie Brown.

 Lost his 1st and 2nd tooth.

 A strong fortruss to shoot down with daddy

 A meal with the Todarov's from Bulgaria.

  A little doll under the tree.

 Rocking

 Resting

 Helping

 Adventure

(She got stuck like this)

Birthday Fun 

 Morning birthday suprise

 Self-made knight in shining armor

The little man

Hosea turned 6 years old on Thanksgiving day this year. Our close friends the Mayers joined the festivities. Between the two families we had 9 children present. That's a party!  We had more pictures, but they are on the other camera. We are so thankful for Hosea's life. He is such a dear young lad. I pray this little dude will grow in godliness, courage and ambition and live to please our Lord with all his heart, might and soul.

Ballet

Shiloh was mentioned in her ballet studio's newsletter for her hard work in class. I just wanted to record it for her. We are of course thankful for the grace in her life.
https://mail.google.com/mail/u/0/?shva=1#inbox/142616da292f62b5?projector=1
It's on page 4 in the bottom righthand corner.

Mercy-a generous gift

I was driving Aggie to school this morning. She was in the back seat saying.... ready, set, go! Over and over and over. She "get's stuck" a lot. We joke that it's like an old record with a scratch.  It often makes us all laugh, and guess what...?? She keeps doing it. :) But this morning it was different, it was making me smile, because it reminded me of the silly games we play at home and allow her to determine when they start. It's one little way that she's included in our tomfoolery. But also I was reminded of a different morning in Aggie's life, where the weather was cool like toady. I looked up the date; February of 2011.  It was the morning we got the results of her MRI.  I remember aspects of it so vividly.  We saw a picture of her brain, it caused me to feel frozen. A later doctor likened it to a raisin instead of a grape. Even the untrained eye can see such a significant malformation. Not only was the size smaller, but there were 2 large holes in the middle as well. We all have ventricles in our brain, (holes) the problem was not with the space it's self, but rather the size. Anyway, Mike and I quietly listened to the doctor as he explained the picture. We maintained self-control and asked objective questions as if in a business meeting. We learned generally that these malformations would likely affect Aggies motor skills and communication.  So Mike and I took Aggie out to the van and got in, I looked and him and said, "this is pretty sad, right?" Finally... I could cry.  His eyes were welling up, "yes" he replied.  Our little baby... who would she grow to be?  How will this affect her?  Now..... fast forward a couple years. "Ready...set....go!"
God has been so merciful to us!!! I am amazed at the progress Aggie has made. She is a chatter box! Loves to talk about everything. We don't always understand her, or it may be the same thing over and over, but she can let us know if she wants something or does not want something. This is communication! I will forever be grateful for the sense of humor part of her brain; because it's on full throttle! She knows how to be funny and knows when we are being funny. And her motor skills are still progressing, she can crawl F..A..S..T! We call it her speed crawl. She has a turbo boost of sorts.  And here recently she has been showing good progress with assisted walking. There was a day that we didn't know if Aggie would sit up.  When I picked her up from school today she walked down the hall and out of the building holding my hand. Praise God!!! What a sweet thing it is.

Shiloh playing the piano

The two older children have been taking piano lessons for a couple months. Shiloh is especially enjoying it and making good progress. She's such a sweet girl!

Salem on the move

She's creeping out of infancy into toddlerhood. 9 months old today.  I wish the video wasn't so dark, small oversight. We tried.

August 2013

Salem is getting so big, she is now 8 months old and has become proficient at sitting up.

 Cheeks, just love em!

 Smiles

 Beautiful Baby

 I was trying to take Salem's picture sitting up and Aggie kept getting in front of me saying "Cheezzz".

 Shiloh was coordinating her outfit with the fan Mema and Papa got her from Spain.

 I asked the kids to go cheer Aggie up, I was cooking.  This is what they were doing, Hosea was hoping on his ball, Aggie loves this and Shiloh was letting her hop on herself.  Sweet little lady. And it worked. I find this scene often, but in different configurations, it almost always involves someone hoping, jumping or bouncing.

 We have accomplished 2 weeks of school!  Hosea is officially a kindergartener and Shiloh 2nd grader. So far we are all enjoying our new schedule, and chipping away at some great goals along the way.

 This is what our kitchen table looked like one day. I can't say it is a rare occurrence. It really captures this season of life for us. Note the portable Dvd player to distract Aggie while we attempt to get her to eat, the iPad, my laptop, mike's bible, Aggie's Mic-key connector, Salem's puffs, bill binder, random cup, 2 kids smoothies, and 2 baby trays (yellow and white). I think i see Shiloh's schedule cards too(no wonder she can never find them).  It is amazing we manage to eat 3 meals a day at this exact same location, I'm guessing this was a Sunday evening b/c of the smoothies? But may be not?

A little practice.

Fort Pickens Photo Shoo

Early in the summer we took the kids out to Fort Pickens to get some shots of them.  We got some nice ones, of course things hardly ever go as my idealistic self would prefer, but all in all, I'm pleased.  I've even made a photo card to send out to friends and family. I have them printed sitting in a pile somewhere. :/

I got the most good ones of Hosea, I guess he was feeling most cooperative.

 Best one of them all together.

 That lil nut of ours.

 She's getting hard to photograph, she's mastered all the poses and fake smiles.  But she has such a beautiful real smile, I just want the real smile. 

 This was an action shot that turned out.

 What a little doll, love her!

 I feel like this captures a lot of our family dynamics, uncensored. 

 Bright eyes.

Diet Up date

Hey Friends,
If you think of it pray for us. The diet isn't going the best. It is causing some serious constipation, and thus causing Aggie to not want to eat. So all this food weighed to the precise gram in a perfect ratio of 1 gram carb/protein to 4 grams of fat, and calculated to the exact calorie amount is not being consumed. :(

I wake up in the morning to cross multiplication of fractions in order to make scrambled eggs and bacon. The recipe looks like this:

11.8 grams of 36%cream
7 grams of "10% fruit" (we've been using orange and strawberry)
4.6 grams of bacon cooked crisp (oscar meyer)
10.1 grams raw egg mixed well
3 grams MCT oil
7.3 grams canolia

Then do your best to mix it all up and make it look delicious so a 3 year old who acts like a one year old so she might consider swallowing it instead of throwing it onto your pantry door and floor.

Incase you aren't familiar to how much a gram is, off the top of your head, b/c I had no tangible comparison until this past week, this recipe makes up a meal that could fit in the palm of my hand. It equals 175 calories, I know this b/c I did the math to ensure it. Basically 2 adult bites of egg/bacon combo and 1 bite of fruit. On a positive note, if she's not eating I don't have to cook. :/

Additionally Our Hosea has an ear infection, he is a little pitiful. We needed to reorganize a couple rooms in the house to Aggie proof them, that's mid task.  And our back yard has 3 trees laying in it that were cut down 2 days ago.  All the while trying to provide somewhat nutritional meals and do the maintenance cleaning required to sustain lives and run the home.

I'm carrying these verses around in my pocket;
Isaiah 43
"But now, this is what the Lord says- he who created you, O jacob, he who formed you, O Israel:  "Fear not, for I have redeemed you; I have summoned you by name; you are mine.  When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  for I am the Lord, your god, the Holy one of Isreal, your Savior; I give Egypt for your ransom, Cush and Seba in your stead.  Since you are precious and honored in my sight, and because I love you.  I will give men in exchange for you, and people in exchange for your life. Do not be afraid, for I am with you."

 Amen

Quick brain unload

 We were on a month long road trip June 18th to July 14th ish. We went to MO to see my family then to OH to see Mike's then up to Cleveland where we were able to speak with a Doctor who had recently done research on children with PDCD and how the ketogenic diet affect them. The diet has had nothing but positive effects on these children according to the study. The Dr. spent an hour and a half answering our questions, it was so helpful!! We also learned some good news.
1. Aggie looks very well for a female with the disease. That she has any form of mobility at all is remarkable. We are so thankful, and hopeful that she may someday walk.
2. If a female with the disease lives to be 4 years of age she will likely live into adulthood.  Since Aggie is 3 and well, things are looking good for a longer life. Good news to us.

Mike is out of the Marine Corp, he has applied to the Navy Reserves and once he is in; he is hoping to apply for a full time job with in the reserves. He is currently unemployed and the paper work for this transition can take 1-6 months.  He's getting a lot done around the house now that we are home.

We went to a parent practicum for classical conversations, our home-school group, for 3 days in July.  I did the tutor training, as I'm going to be a "tutor" (aka teacher) in one of our children's classrooms when we all meet on Tuesdays.

We started Aggie on the Ketogenic Diet 4 days ago. She is officially in ketosis, which is the goal.  It is suppose to supply a more useable form of energy for her.  She won't eat much(which is not the goal), but is drinking her new formula well.  Her temperament is relatively the same, which has large fluctuations on a normal day, so it's really hard to tell how she's feeling.

Salem is starting to roll all over the floor to get to what she wants. She is nearly 7 months old. It's nice to see her progressing. She's pretty cute and sweet. We love her!

Salem getting cup

Things like this tickle me.  I think it's b/c most of the things Aggie has done/accomplished have been taught by much repetition. So I have forgotten how healthy little ones are naturally curious and try their luck with learning all on their own.

Salem is a prodigy, she has grabbed a cup :)

On this note: post Aggie parenting........ I still, to this day, every time I change Salem's diaper/cloths or even just hold her, I find my self being cautious around her tummy as if to be sure not to disturb her G-button.

Aggie one hand walking

We are getting closer!!!

Genetics-Pyruvate Dehydrogenase Complex

The Genetics Doctor called today.  The results of Aggies muscle biopsy are back.  The muscle was tested twice. One test showed 7% muscle function and the other showed 40% muscle function. 50% is normal. The reason for the variation is that PDC is an X carried gene mutation.  Girls have two X's per gene.  So if one X is 7% then the other could be pulling the weight. Based on Aggies "clinical findings" (small head, brain damage,ect) it is evident that the brain is affected by the mutation.  If Aggie were male she would likely no longer be with us.  Since she is female, prognosis varies, but rarely exceeds 20 years of age.  The treatment is a ketogenic diet. We will go to Birmingham next Wednesday to learn about it.  The diet is suppose to prevent further damage to the cells by primarily using fat for energy instead of carbohydrates.

This is a portion of wikipedia's definition that explains it well.

"Pyruvate dehydrogenase (PDH) deficiency is a congenital degenerative metabolic disease resulting from a mutation of the pyruvate dehydrogenase complex (PDC) located on the X chromosome. Although defects have been identified in all 3 enzymes of the complex, the E1-α subunit is predominantly the culprit. Malfunction of the citric acid cycle due to PDH deficiency deprives the body of energy and leads to an abnormal buildup of lactate."

Hello

Salem's 1st Giggles

I caught the tail end of her 1st giggles, before she was wore out.  Hosea was the entertainment, which is no surprise, since he prides himself in his ability to cause us to "crack up".  She had about 3-4 other giggles that I missed as I was rushing to find the camera.  I always pause prior to grabbing the camera thinking should I just stop and enjoy this moment, soak it all in.  Or should I miss part of it in an attempt to capture it to enjoy in future and share with others?  Dilemmas....... Then of course after i got the camera I got just one of the exciting moments and then................silence.........crickets....

Buddies

We may have some noise in our future :/



Hosea loves to play with Aggie.  Sometimes when she is napping he will be looking for her to play and will ask if she is napping, and be disappointed when he finds out she is. He is a sweet big brother to a special little girl.

Classical Conversations End of Year Presentations

The children had an end of year presentation/ceremony and everyone did their timeline song together.  Each class had their own little separate topics also.  Please forgive the poor footage, i was nursing and videoing with one hand, high in the air trying to get around a head that was in front of me.  I ended up not being able to make it though the whole song because 1. my arm hurt. 2.  Salem was done eating and started to fuss. You may be asking where Mike was during this whole ordeal; he was wrestling with Aggie in the back.  She is uncharted parenting territory and we are fish out of water sometimes. Lord give us grace!!! Enjoy the videos.



Hosea doing Latin



Shiloh doing the President Song

Aggie's Field Day

She took a little stroll in the gait trainer. She's not really a fan, but they keep trying.

Also amusing....

When Aggie is done eating she is in the habit of taking her bib off over her head and throwing it on the floor. This particular day I had left her in the chair a bit longer than she would have preferred.  She tried to take her shirt over her head and succeeded, but she didn't have the arm thing figured out so well.  Small things like this make me chuckle.

Funny

Salem

She's so cute, and funny and sweet.

Tour de Virus

It's been a while since I updated, with good reason.  We've had a little "tour de virus", we are visiting many places, most of which seem to be on the continent of Stomach. But a couple have had a nice long visit of Cough Congestion and Sinus. The duration of our travels have been a luxurious 2 months and counting..... as yet another one stopped off at Tummy Troubles just this evening.

All this sickness hasn't given us much to photograph, but some funny sleeping pictures.  We seem to be particularly amused at finding our children sleeping in interesting positions and places. Maybe you will chuckle too.
Note:  We don't have a picture of Shiloh, she doesn't sleep much in the day.  She does however like to sleep in a little later in the morning than the rest of us.

 Salem in bumbo

 She's just like the other Schloss babies, she likes her "silk"

 Aggie under the pillow

 Hosea on the living room floor

 Aggie in crib, with braces on, feet up

 Hosea on couch with grandpoo

 Salem.... so sweet

Hosea with cookie