Life goes on

We've had our first winter virus this past week. Considering we are well into winter I'm feeling pretty blessed it held off this long. It started with Mike and slowly took us down one by one, then Shiloh, Hosea, Aggie and finished with me. It was a cold/flu mix. No vomiting, thank God for that! Head congestion, coughing, skin aches, head ache. I'm still in the throws of it I think. I thought i was getting better yesterday, but was up coughing much of the night. Thankfully I have been able to do some chores today, so i'm not completely wiped out.

On another note. We've really been enjoying watching Hosea be a big brother. He loves showing Aggie all her toys and talking to her about life. This particular picture was going on at the kitchen table while i was cooking dinner one evening. They were both occupied for quite some time

Da Girls

Shiloh picked red, so we all did red. Poor Hosea felt very left out, you can see the bottom of his feet at the top of the picture, he thought he was in the shot. No red for him:(

It came out!

The neighbor is on it's way out. Whole apples and pears are a current past time for Shiloh.

The Brain

God has answered some prayers, but probably not in the way one might think. I've been praying for the Lord to draw me to Himself. To keep me from wandering... and from temptation. To fill me with desire for Himself.

Though I am weary....... I am very aware that He is near. Being acquainted with the life of a mother to a "special needs" child, I am confident that He will be staying close for the duration of my life here on earth. It will require grace from me that I can not produce on my own, which will force me to call out to Him, lean on Him and rest in Him. I am so thankful that He has chosen to keep me at His bosom in this way. It truly is the desire of my heart.

We did see the Neurologist today. He confirmed what we knew. Aggie has PVL. He would not make a prognosis for Aggie based upon the MRI, as they are often inaccurate. We did see the picture of her brain, and it was quite obvious where the damage is, it was a very sobering picture for me, as I understand words much better when there is a picture explaining them. The left side has more damage than the right, so the right side of her body will more likely need more encouragement. We left with little to no expectation of what Aggie will or will not be able to do. We do know that the area of her brain that is effected controls gross motor skill and communication. Do to scaring from the damage, growth of "white matter" which is what transports information from the brain to the body may not be able to grow properly or at a "normal" rate. All this to say, that we are trusting God for His perfect plan for Aggie.

I would be blessed if you would continue to pray for us in this, as it will be a life long journey that holds much uncertainty. I will be praying for God to bring healing to Aggies brain, to re-route information in places where it can not pass through, and that we will know how to best care for Aggie. Also that God would bring the right people into our lives to be used as resources for her therapy, and for the opportunity to share the gospel with those people that they too may know the love of our savior.

Aggies next appointment with neurology will not be until May, there are still labs pending that were drawn a few weeks ago. Now the main goal of the neurologist is to figure out the cause of the PVL. They are feeling certain that is was something in utero, given her small size at that time. The only reason we would want to know the cause is if it is something that could affect subsequent children (genetic), if it is something that is progressive, or if it is metabolic and may possibly require some sort of treatment.

Weigh In

12 lb. 11oz. She is still trending upward.

We are waiting for tricare to approve referrals for hearing aids and to have her eyes checked, since people with PVL often have trouble with their sight.

I've been a bit weary this week and feeling a little overwhelmed. I've been actively fighting the battles in my mind with Gods word and prayer. Today has been a more peaceful day. I painted all the girls toes red, just for fun. I'll post pics soon.

My mom has decided to come for a visit. She will arrive Monday, I am anticipating her helping hands and companionship with eagerness.

Neurology

Our Appointment for Monday was cancelled, the Dr. was needed in the hospital. It is re-scheduled for Friday.

What's in a name?

Yesterday the endocrinologist told us that are sweet little girl’s MRI on her brain came back abnormal, though that is all she said and would not disclose any further info. Appollo called the neurologist and despite the nurse’s determination to not reveal the results, Appollo was able to pry out the gist of the results. Basically what we know is that our girl had a brain hemorrhage during or shortly after birth (not uncommon for premature or small babies). This led to a condition known as Periventricular leukomalacia (aka... PVL if you can’t pronounce the long medical words). From all that we read she has a decent chance of developing cerebral palsy or epilepsy. We of course wept together at this news, but it was not what you might think. There was a touch of remorse, but it was not all or even mainly remorse. You see, we have a hunch that Aggie is going to teach us more about life than we are going to teach her. Appollo told me a story about a young lady she saw at the hospital after Aggie had failed another hearing test. This young lady, probably in her 20's, appeared to have a disability and was wearing a hearing aid. She was also a volunteer at the hospital and had a cheerful pleasant spirit. Appollo had the thought "Is this what Aggie is going to be like when she gets older?" It wasn't a disappointing thought to her. The Bible says “God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong”. We live in a culture that values the powerful, intellectual, beautiful, and popular. We idolize celebrities and athletes. In fact, I read that 30 years ago a doctor would recommend a child with cerebral palsy be put in an asylum and forgotten. But who reflects more of our Father’s glory... the rich athlete or the 20-year-old girl whose life has been full of trials who joyfully serves in a hospital? I’m not trying to spiritualize disabilities as if they are sanctifying in and of themselves. They are not. Everyone needs Christ. We’ve already started to see some of Aggie’s feistiness to assure us of her need of a Savior. But there does seem to be a naivety and childlikeness in some of the folks I’ve met with disabilities. And I think God can use them to shame the rest of us “normal” people. Time will tell if and how much Aggie is disabled. But our hope and prayer, whether her body and mind is strong or weak in the world’s eyes, is that she would glorify God. What’s in a name? I’m not sure but I think it’s fitting that Aggie means “kind, good, pure, and chaste”. May God make her a reflection of those attributes!

Developmental Evaluation

Aggie was referred to the "First Steps" program, which is a program funded by grants that helps families with "special needs" adjust to life with a special needs family member and comes along side with all sorts of resources. one example. So Aggie had her "Evaluation" with them today. It went well, I wasn't sure what to expect. There was a Dr. of psychology, a physical therapist and 2 case workers. I forget the name of the test they filled out for her, but the Dr. asked a series of questions, the physical therapist did a little evaluation and the other two were taking notes. After about an hour, they formulated their answer. There were 6 categories, I can't remember them all..... gross motor skills, fine motor skills, communication???? Any way, Aggie's lowest score was in communication, not to shocking given the hearing loss. All her scores were high enough that if she did not already have the diagnosis of "hearing loss" the she would not qualify for the program. This was great news! I'm not certain of all the things they are going to be able to do for us to help Aggie. Things that were generally discussed were, having physical therapy evaluations closer to home, assistance getting good hearing aids, though I think the Audiologist and our insurance will be key players in that, these people coordinate with all of Aggies Dr's to make sure she is getting a high level of care, and nothing is being overlooked, some extra teaching on hearing loss and what life-style changes need to be made to accommodate to that. That's all I can think of right now, it was a lot of information, all good. I have a 3 ring binder full of stuff that they gave me to check out, so i'll need to do some reading soon. Now I need to go get some chores done before ballet.

Happy Valentines!

I have really been trying to make Valentines Day a day that I focus more on loving Mike and the kids in an exceptional way, than I do on receiving love. Sadly this has only been true for a few years, I use to be more concerned with how well Mike could love me, so sad! Praise the Lord for sanctification! Anyway, it has been so fun for me to be creative in this way. One year I did something really corny and awoke early b/c Mike had to work, and served heart shape pancakes, and bought heart shape mugs, and a few other cheap items and romanced my man for breakfast. Since Aggie had her MRI this morning, I needed to think of something new and different. Since I recently read some chapters in "Treasuring God in our Traditions" by Noel Piper, I read about a good idea for Christmas, but I was a bit late for that, so I decided to implement it for Valentines Day. I was especially urged to go forward with it when my good friend CS, was doing the same good thing only with no holiday attached. Which I think we will do also. So for Valentines Day the Kids and I memorized Psalm 23 and they preformed it for Mike, there were other sweet things like a card and candy, but I think this was the best part! Never mind Hosea's performance skills, he gets it from His mom.

This was also a humbling experience, as I have never been good at memorizing things, it's right up there with my spelling and gammer skills. My sweet Shiloh had it memorized before I did, and had to help me at times when we would be practicing with out our notes, usually in the van. I hope to have this experience again in the very near future, it's sooo good for us. What scripture to do next? Hummm???

MRI

Aggie survived her second round of sedation. The short version is this; I don't know the results.

We have to wait for a radiologist to read the MRI and send the report to Aggies Neurologist, the gentleman that ordered the test. We will meet with him next Monday to know the results of the MRI and several Labs he had ordered, that were drawn while she was sedated last time.

The Line Up

Monday 14th-MRI of brain (more sedation) Happy Valentines!

Tuesday 15th-Developmental Evaluation

Wednesday 16th-Endocrinology and Audiology

Thursday 17th- Termite Man, O wait I'm off topic. :)

Monday 21st- Neurology

Tuesday 22nd- Well Check, these seem so silly at this point, but I'll comply.

Who Knew?

A few of our articles of clothing or blankets have fallen victim to the washed and dried sticker adhesive. Our kids are the perfect age for this sort of thing. I'm always so bummed b/c I've never been able to get it off. I usually end up throwing the article away, as it seems to be mocking me every-time I look upon it. But Last week, we took one of Aggies softest/nicest blankets to the hearing test, for a variety reasons, all of which were sleep related. Anyway, the blanket fell victim to a hospital sticker that I didn't realized until I was folding and putting it away. After a google search and many good thoughts, this is what worked. It is a pretty fuzzy blanket, one of the softest ( just so the know the material i was working with). Hears what I did: 1. warmed the sticker with a paper towel over it, pressed it with a warm iron. I had to do it several times b/c once the adhesive would cool, it got hard again. 2. scraped the warm adhesive off with my finger nails, I suppose a knife probably would have worked. 3. Once it appeared it was all gone, and I just felt a little bit of residue, I sprayed it with "goo-gone" and used a tooth brush to brush out the rest of the ick. I just got it out of the dryer, from the "re-wash" and I can't even tell what corner the sticker was on! I'm thrilled! Up until now I didn't think there was hope for victims of the washed and dried sticker.

What does THAT mean?

We haven't had our follow-up appointment with the Audiologist yet, but I have been trying to educated myself on Aggie's situation via a book and the internet. I found this cool "hearing loss simulator" it is very helpful in understanding her hearing capabilities. So just incase you were wondering what "mild or moderate" hearing loss meant, this may answer your question pretty well. Check it out!

Ears

My glass is half full...........No, wait "my cup overflows".

Little girl had her sedated hearing test this morning. She had her last meal at 2am, I awoke at 445am to get ready and head to Pensacola(an hour drive) to check in at 630am for our 800am procedure. Considering everything it all went well. I could tell we were lifted up in prayer and the Lord showered us with His peace. We waited in Pre-Op for the hour and a half, Aggie slept for most of that time, even though her belly was empty, praises to God! She fussed for about the last 15 min., but in her defense the Dr. was late, so had he been punctual it would have been only 5. Still not bad all things considered. She was away from me for about 3 hrs. I brought my bible study book, a blanket to crochet on, and a movie on the portable dvd player. It was really a nice little break for me to enjoy some time alone, well as alone as one can be in a waiting room. Mike stayed with the other Schloss babies.

The results of the test were this; Aggie has "moderate hearing loss" in her right ear. We kind-of knew that, except they used the word "severe" last time. Her left ear has "mild hearing loss". She has a follow-up appointment in a couple of weeks. We will discuss hearing aid options at that time. They are thinking that she will probably only need one for her right ear, since the left ear is mild. I am really greatful for this experience. I am so thankful that she does not have a chronic issue requiring extended hospitalization, for the testing, for the wisdom the Lord has given doctors, and for the treatment options available to us. God it good! I am super thankful for the nap I think I'm about to get. :)

Do it! I dare you!

No...........I double dog dare you!

A couple of years ago I started trying my luck at yeast breads, at a very slow rate. Given my culinary experience(except for confections) this was a "giant leap" for me in the kitchen. I would still consider myself an amateur, but I have enough bravery now to give any loaf a try. Sooo..... we of course love the rosemary bread at the Macaroni grill, my man especially digs it since rosemary is one of his favorite spices right under garlic, and tasty cooked dough is up there on the yummy list also. So I was aiming to please, or bless the love of my life with this one and the Lord was pleased, and manna rained down from heaven. Check out the recipe here, it's super easy and really tasty, especially dipped in olive oil with pepper. NO PRESSURE. YOU'VE GOT TO TRY IT!!

Neurology

Well we got to have our long awaited neurology appointment yesterday. Aggie stole the hearts of all she encountered with her warm smile. Additionally they got a glimpse of her personality as she would complain when she didn't like what they were doing and affirm them if she did. She has for sure been my most strongly opinionated child at such a young age. The general conclusion of the Doctor was this: He said his "gut feeling is that she is fine", her size is small (weighting in at 12lb4oz at 7 months of age), her muscle tone is low. Meaning Aggie is basically a little shrimp with a lot to say. It's hard to be strong when your so petite. He also confirmed that developmentally, she is meeting milestones either at the end of the average age range or a month or two late, but since she's being consistent at this and "setting her own curve" and staying on it, that is good. The same is still true of her weight. Aggie will have to have an MRI under sedation and some labs done in the near future, "just to be sure". We have to wait for insurance to approve it and for them to schedule the testing. She will have her hearing test done this Thursday under sedation, please pray for that to go well.