Alabama

Tonight I'm writing from the sunny south; I'm in a little town called Citronelle, Alabama that my parents call home. In some ways, Alabama feels like a different country - not state, but it has a strange way of growing on you. The dirt is red, the skies are blue, and EVERYBODY waves at everyone else.

We made a rather spontaneous trip here for a visit in between Avery's doctor appointments. He was given a two week break from lab work, so we took advantage. I believe this is the longest break he's had from needles in about a year!

My mom and I have been shopping and eating at all our favorite spots. We've been dragging the kids with us, but they've been cooperating pretty well. We actually have Grace with us too! This is her first trip away from her parents, and she's handling it surprisingly well. Bryson has been riding the four-wheeler with my dad and begging to go fishing. I believe that will happen in the next day or so. We have a beach visit planned and of course, much more shopping! It's fun just to enjoy spending so much time with my parents and let my mom and dad spoil us a bit.

I've gotta run because my mom is home with the kids while I sit at a small restaurant in town using the wi-fi. I'll update with pics as soon as I can!

Remembering God's Promises

The other day while I was in my car, I was listening to a radio program. I don't know who the speaker was, but she was talking about the sovereignty of God, and it really spoke to me, so I'm going to share. She said that if God is not sovereign, then He's not God. Therefore, if we say we believe in God, everything we encounter is part of a wise plan that we may not see or understand. It's easy to say we believe in God, but when bad things happen, sometimes we find ourselves thinking we are just a victim of chance or coincidence. Of course, these words were nothing new, but the way she spoke and with circumstances in my life, it has had me reflecting on my beliefs and my attitude.

To say I trust God doesn't only mean that I trust Him to answer my prayers. It also means that when He doesn't answer the way I want Him to so badly, that I STILL trust Him.

I have to say that it's easy to get sidetracked with why-me's and what-if's. It's easy to get discouraged when it seems that prayers go unanswered. It's REALLY easy to become overwhelmed with worry and grief. It's easy to feel like a tiny speck of sand that is so tiny and insignificant. But sometimes I just have to readjust my perspective and remind myself of God's promises.
~God will work all things for my good.
~God will never leave me or forsake me.
~God values me (and my family) more than the sparrows.
~God understands my burden and will not put on me more than I can bear.
~God and the Spirit He has placed within me is greater than anything in the world.

Lately I have found comfort in the remembrance that God is sovereign, that He saw my circumstance coming before I did, and that somehow He will bring something good from it.

Update on Avery

We met with a doctor from Cincinnati Children’s Hospital today. Our goal in meeting with him was to get a second opinion on Avery’s health issues, since Dr. Harris is a senior bone marrow failure specialist who has more experience with Diamond Blackfan Anemia than our current hematologist. We were also hoping that he or someone he could refer us to would be able to put all of the pieces together, because Avery has many conditions that, so far, have not been tied together. He spent over an hour with us explaining to us some very technical, scientific processes and terms and drawing diagrams to help us understand. I’m going to try to pass on the information the best I can; please keep in mind, I am not a medical professional and may not say everything perfectly.

Avery’s journey w/ DBA started back in May of ’09 when he first presented with severe anemia. He was 13 months old, which is older than most people with DBA. Since then, he has undergone blood transfusions and has been responsive to high doses of steroids. Whenever we tried to wean him off to a lower dose, his hemoglobin dropped very quickly; thus, we started the process again and are trying yet again to wean him. This past fall, Avery’s platelets started to drop, slightly at first. Then they would rebound. They have continued to drop lower and lower and have not been rebounding as high. The platelet issue is untypical of most DBA cases, which has caused us some concern. The platelets could possibly be explained by a nasty virus that damaged his marrow and may take some time to recover from. However, Dr. Harris today explained that considering his late onset of symptoms of anemia, and now his platelet issues, we have to consider that Avery may be moving to full bone marrow failure. Also, having DBA already puts Avery at risk of developing leukemia. So, he suggested that we schedule another bone marrow aspiration to check and see if the platelet issues are a result of a virus or if there is a deeper problem emerging. The standard treatment for DBA is steroids (if they work), blood transfusions, and bone marrow transplant if the previous mentioned treatments aren’t working effectively. If by chance the bone marrow aspiration shows signs of full marrow failure or leukemia, Avery may then become a candidate for a bone marrow transplant. If the aspiration shows the same results as his biopsy from last year, we will continue with the weaning of steroids. If this does not work, he may become transfusion dependent, which carries its own long list of side effects.

We were also given some interesting genetic information. Avery’s microarray, which is basically a study of chromosomes and genes, shows that he has an extra copy of a gene on a chromosome. This second copy of the gene (called a Dock 8 mutation) occurred on top of the gene below it, cutting it in half. While the studies don’t indicate clear results of this particular mutation, the doctor today gave us some case studies done with children with this mutation. In this particular case, the children experienced developmental disabilities and some level of mental retardation. While he couldn’t say for sure that this genetic piece is the root cause of Avery’s severe developmental delays, this is the first piece of information we have ever been given that indicates a probable cause. The silver lining to this news is that finding this genetic mutation in Avery can be helpful perhaps in identifying other genes involved with DBA, since only around 45% of the cases have been genetically linked. When the doctor saw this mutation in Avery’s genes, he called a doctor from John Hopkin’s University, who is involved in DBA genetic research. This doctor was very interested to hear that Avery had a Dock 8 mutation, and said that he will begin research in this area to see if there is also a connection to DBA. This could be pretty amazing, since like Avery, there are many genetically unidentified cases of DBA, and searching for those links is like looking for a needle in a haystack unless you have a clue like Avery has provided.

All in all, we were given a lot of information and maybe some new direction. It’s going to take some time to process all that we were told. There are so many days I wish we could just stay home, lock the door, and never take Avery to another appointment; of course, I know that’s not possible. I hope you will all keep our little Avery in your prayers. We know that doctors can do so much to help, but we believe that God can work miracles.

Rainy Day Ramblings

This week has really flown. Besides today, the weather has been AMAZING! Bryson has enjoyed playing outside, and Avery tried out the new baby swing we added for him. He loved it! It was so nice having Phillip home all week, although it felt a little strange. I had a lot of flashbacks to when he was laid off; I just had to remind myself that he's still getting a paycheck! We got quite a few odd jobs completed around the house; when I say "we" I really mean "he," but I like to think I played a part as well. It will take a little while to adjust to the new work schedule, but I think we're really going to like it. Of course, he's at work right now working his second double shift in a row. But he's a tough guy, and he'll somehow handle it just fine; that's one of the many things I love about him.

In an effort to keep the house quiet so Phillip could get a few hours of uninterrupted sleep, the boys and I went to the mall. I know, it sounds like I was just wanting an excuse. It was pouring the rain, and getting little ones in and out of places is a chore in good weather. Needless to say, we were soaked. Bryson played some of his rainy day energy out in the play area, and Avery and I watched. Avery just smiled and clapped as the kids ran past him. I couldn't help but wonder if and when Avery will get to be a participater, and not just a spectator, but I try not to keep those thoughts too long. I try to just live in the present and take life as it comes! I spent way too much money at The Children's Place, which reminded me of why I stay away from the mall. Bryson was picking, so we had to eat at Taco Bell in the food court. We got home just in time to spend a few minutes with Phillip and send him back to work.

I need to go to the grocery, but the thought of taking the kiddos back out into the yucky weather is just too much. I think we'll just stay home, take our baths, get into our pajamas early, and play until bedtime!

Here's a video from earlier in the week of the boys. Bryson is singing a song he calls "The Johnny Appleseed Prayer" that he and his classmates sing before snacks at preschool. Avery really enjoyed it!

Monday Happenings

Today was a busy Monday, filled with many of the usual activities: labs and therapy for Avery and grocery shopping and work for me. Some UNusual events were on Phillip and Bryson's agendas.

Phillip started his new shift at work today, which is actually just working double shifts on Fridays and Saturdays. This gives him Sunday through Thursday off! Today was one of those crazy days where we barely saw each other, but I'm looking forward to having him home more. Some women love it when their husbands are gone, but I'm quite the opposite. I like having him close. In fact, maybe a little too close. I'm sure he'll find a new routine to keep him busy; otherwise, I may drive him crazy!

A big event for Bryson was his first parent-teacher conference at preschool. Phillip and I waited with sweaty palms and nerves on edge, wondering what in the world the preschool teachers would tell us about our little red-head. We know he's not perfect, but it was nice to hear that he is very polite! He's doing pretty well with colors, numbers, and recognizing his name. He is still working on learning to share (aren't we all?), but he's starting to socialize more with his classmates. They claim he's a pleasure to have in class, and they love his "orange hair" as he so clearly tells anyone who dares mis-state his hair color.

We also put our house up for sale over the weekend. With the housing market being so crummy, I'm not holding my breath for a quick sale! We're hoping we can get some of the equity we have in our house and buy something we can make more accomodating for Avery. Right now, he's pretty much confined to my kitchen and dining room areas when he's in his walker. We're going to put wood flooring in our next house so that Avery is free to explore. Of course, I'm not looking forward to moving, but it will be for the good. Until then, I am going to keep myself pretty stressed out about keeping my house clean and "showable." It's amazing how as I clean one room, the other rooms I just finished are getting cluttered again. I guess that's life with toddlers! So that's our news for now.

Spring Fever!!!

It's official: Spring fever has struck the Hoskins' house! I've been feeling the urge to attack the clutter that has built up throughout the winter. I've cleaned light fixtures & ceiling fans, windows & corners w/ cobwebs, and have now moved on to closets. I love cleaning out the boys' closets and sorting through their new spring wardrobes. Just looking at the colorful fabrics and organizing the boys' t-shirts, plaid shorts, and sandals makes me long for warmer weather and all the fun that goes with it!

Bryson has been asking me almost once an hour the last few days if he can go play outside. Of course, I tell him no because it's too cold. But I feel his pain as he looks longingly out our sliding glass doors at his swingset and the yard where the grass is finally visible. He has simply run out of things to amuse himself with indoors!

Avery's compromised immune system has had just about all of the winter sicknesses that one person can handle. He's been hospitalized with H1N1, RSV/pneumonia, and had bouts of bronchiolitis and ear infections in between. I can't wait to take him on walks in the stroller and let him try out his gait trainer on the sidewalk!

Phillip has never been a fan of cold weather, and who can blame him? He's the one who has to keep our driveway and sidewalks clear with each new snow. I've run out of positive replies to his occasional complaint of "I HATE snow!"

It seems like the sun is even getting a little impatient! It has been rising earlier, staying out longer, and shining full force. Yesterday, Bryson got out of bed and came into the kitchen where the sun was shining through our back patio doors. He said, "Mommy, why is the sun shining?" Poor guy has gotten so used to dreary days that the sunshine is unfamiliar.

So the house is starting to look fresh and clean, and the boys spring/summer clothes are organized in bags and boxes, just waiting for a more appropriate time to put them in the closet. I'm dreaming right along with Bryson of hot, sunny days where I can sit on my deck in a lawn chair reading a book while Bryson plays his heart out in the back yard with Avery watching us through the screen door. Enough already! Bring on the warm weather!

Here are a few pics from last spring/summer!