Walking!!!

My heart is full as I write the the title for this post.  Full of thankfulness and a little bit of disbelief. In the sense of "Oh my goodness, I can't believe it!.  Can you?"
The story in full, well.... as full as it's going to get.
A few weeks ago both Aggie's teacher and I pointed out that Aggie doesn't really need our hand for walking.  She could have a loose grip on our little finger and be walking along side us fine. But the moment the little finger is removed, down she would go. It was a learned behavior, a sequence of events; finger removed, I must sit. So at her IEP meeting two weeks ago we all (teacher, therapists, myself) discussed what we could do to break this learned behavior. What we came up with is not what actually got Aggie to walk. The point to this is, we saw the ability.
The story as told by the teacher and OT.
Last Friday, April 4th, 2014. Aggie's OT Dawn, entered the class room for therapy. Aggie was excited to see her. The teacher, Donna, was walking her toward Dawn and let go of the hand a few steps prior to her getting to Dawn and Aggie took a few steps on her own to finish the distance. They all noticed.  So Dawn left the room and re-entered to re-inact the scene but Donna released Aggie's hand a little further away from Dawn and Aggie again completed the walk on her own. Repeat this scene a few times. (They are so thoughtful and good to her). I'm not sure what all happened in between, but I'm guessing by all the video they showed me, that they went to get the PT, Neoly. Because most of the videos they have shown me, are of Neoly walking behind Aggie and singing, and Dawn taking video and shaking keys. They told me they had her walking the halls of the school most of the morning. Practice makes perfect.! The initial video I posted on Facebook is the only one they could send to me on my phone b/c it was the shortest and smallest file. And it was of her walking up a ramp!  This video Dawn took the time to email to me and it is a bit longer. When I arrived to pick Aggie up from school they had her waiting outside with OT, PT and conductive PE teacher, and had her walk to me. How  special and thoughtful. I cried... I think I even snorted... What can you do? She's walking.
What's next for Aggie?
Though Aggie is taking independent steps, she still needs to learn to get herself into a walking position to begin walking. We currently have to stand her up and say "go get (toy/person of choice)". And though she can pull her-self to standing, she does not know how or feel comfortable transitioning to walking from this position, which you can see at the end of this video once she finds the wall. Also endurance and strength. These are the things I'll be praying about and we will be practicing. Most of Aggie's physical developments are skills that we've had to teach her, one step at a time, so we will continue in this fashion. I am thankful that she is still able to learn!

Amendment: Regarding Lab Work

 I received a call from Aggie's genetics dietitian yesterday. On behalf of the doctor. Baylor University has made an amendment to one of her labs drawn in 2012. They have found another mutation. The same mutation was found in an infant baby girl who died shortly after birth. Therefore they are more concerned of the progressive nature of our circumstance. It was all read to me over the phone, it will be mailed soon. There is no name other than the specific gene numbers and letters. It does not change her diagnosis of PDCD or treatment. It basically doesn't change anything other than potential for quicker progression. We already know Aggie has a progressive disease, and will not live a "normal" life. So we will keep on living and loving her. It did cause the doctor to express further concern about the other girls being tested (being genetic in nature and X linked), which has been denied by our insurance.  We have appealed twice with no luck. Perhaps the new information may help it to go though? The Genetics doctor wants to see us again. Not urgently. So we will plan a trip to Birmingham soon. I always hate spreading news like this, but I know everyone likes to know. 

On an encouraging note I just want share that some of the biggest things God has taught me though all of this. 1.He hears our prayers. When I was pregnant with Aggie God laid it on my heart that she was not going to be "normal". He cared so much for me that he prepared my heart early. I started praying for her then that he would have mercy on her, heal her and sustain her life. That Aggie is alive today and not with the Lord, like the other child with her mutation attests to His hearing and answering those early prayers for her. 2. He cares much more about our holiness than our comfort. It is very uncomfortable at times walking this road He has laid our for me, but it has been a huge source of sanctification and making me into Christ's likeness. 3. He cares more for my child than I do. He created her. I have laid her at His feet many times for surgeries and tests, in-trusting her to His care. Her creator can provide for her in innumerable ways that I can not. 4. It has caused me to face fears that I thought might kill me. And remove my children as idols so that I might see my savior more clearly. For that I am thankful.

The New Job

Mike has started working for TKI. It is a company, contracted by a company, that is contracted by the government to teach foreign students how to fly. This class is in a classroom. It's lectures for the students, prior to going to the squadron. He dresses up all fancy in civilian cloths with a tie and such and shares his knowledge of pilot skills with Saudi Arabia gents. This is his 3rd week with TKI and so far he's enjoying it. It's 40 hours a week. He likes his fellow instructors. And he is still flying 5-7 days a month with the reserves. So needless to say, it's been busy around here. I am thankful for the Lord's provision.

Mr. Schloss' Job and Ketogenic Diet

After speaking with a close friend this week who lives far away, and is kind enough to read my blog I realized that I have not put any updates of some major life events in our home.  Mostly this is due to time constraints, and my attempt to balance something that is very unbalanced.  I try not to spend much time on the computer. We have a house full of people here at Schloss Casa that require much of my attention.

On to it then: Mr. Schloss's Job or should I say Lieutenant Schloss' Job.
Mike is now a Lieutenant in the Navy Reserves.  He separated from the Marine Corp this past summer with the intent of doing an inter-service transfer to the Navy reserves.  I am so thankful to the Lord for the time we had to plan and prepare for this transition as we knew it would mean at least 40 days of unemployment.  And in typical military fashion, it took way longer than expected.  Mike was unemployed for 6 months. He started checking in with the Navy in December.  For the first couple months he has been able to secure "active duty" status with the reserves, which is a blessing finically for us as he considers and looks for jobs he can do along side or with-in the reserves. Thank you for your prayers!

On to other big news....... we paid off or mortgage!!! So this reduces our monthly bills significantly. Pretty exciting!

Aggie has been on the Ketogenic diet for 6 months now.  It is the only treatment that is being tested for her diagnosis.  Her diagnosis is Pyruvate Dehydrogenase Complex Deficiency (PCDC). It is a metabolic disorder and mitochondrial disease. Her body is unable to use carbohydrates for energy. Instead of making energy it would make lactic acid, which would accumulate in her blood and cause damage to her brain.  Which is why her brain is already abnormal. The diet is, in theory, suppose to slow this process down. It trains her body to use fat for energy instead of carbs.  I have been thankful to see the diet has benefited her in some great ways in this short time; proper weight gain, increased energy, are two big ones.  She still gets crabby, and can be difficult to manage, but the incidences have decreased. She naps less because she has more energy.  Her main source of nutrition is a formula called Keto-cal designed specifically for children on this diet. It tastes like melted ice cream and Salem would be thrilled if it was what we put in her cup, as we often find her confiscating Aggie's cup. I do continue to make and weight out grams of food for recipes and meals for Aggie. We are in more of a groove now with that and have found some of Aggie's favorite things to eat.  One thing that has been disappointing for me is Aggie's lack of desire to eat. She does not eat much or often. I have had to relinquish my desire for her to be "normal" in this area as well, as it may never be part of her life. Eating is more a form of entertainment for her and her ability to consume enough to meet her nutritional needs is not there.  She loves to eat ice chips, which she is allowed in unlimited proportions. She requests it often.  One negative side effect of the diet is constipation, and we have worked out some kinks with that. We now use MCT oil as part of her evening meal to keep her regular, which works most of the time. Occasionally medicinal intervention is necessary. One other large risk of the diet is kidney stones. We have no reason to think she has those and have been running water through her feeding tube during nap time in an attempt to prevent them.  We still run the feeding pump at night most nights which generally complets it's feeding at 2:00 a.m. and I tend to it. She is suppose to drink 20 ounces of formula in a 24 hour period, so what she doesn't drink in the day she gets at night. All in all we are seeing that the diet is affecting her positively and plan to stick with it as long as it suits us.  It is some extra work for both Mike and I. Mike compounds(crushes) all her supplements that she receives twice daily, so that they are carb free and can be given with liquid though her tube. Any additional medicine she needs I crush and weigh on a milligram scale so it is an accurate dose for her weight.  Thankfully this is only occasionally that she has need for this.  The diet has been good exercise for my brain.  I have been re-acquinted with some intense algebra, could probably eyeball what 15 grams of butter or banana is, and have tried my hand a pharmaceuticals.  We are thankful for God's grace to do what He as called us to in this difficult season of life.

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.