Sunday, September 4, 2011

What a shift this week!

So I was actually slow to post the last blog for over a week and now I am finally catching up with this week's updates..

The first week of school went really well and even on into the 2nd, things were chugging along pretty smoothly. We are having to remind little miss Bella about all those important 'chatty cathy' rules..(wonder where she gets those traits??).. no more talking in class, stay in her seat, raise her hand etc.. but she is loving class and her new teacher. She had her first spelling test this week and I am so happy to report that she aced it.. even the bonus words! I knew she could spell the words just fine, but she has a tendancy to get overly nervous and not show what she knows under pressure.

Sofie is really loving her VPK 4 class and has even stayed late for "lunch bunch" several times. I am always hesitant to let her do this in the warmer months as it means an extra hour or two out on the playground after lunch in the heat, but she loves to play hard and it does burn off some of her crazy energy.. (irony is I would do anything to bottle her endless energy and pass it over to Mr. Sam-ster) an added perk for when I just need the girls to take some down time after school. Sofie's big focus this week has been on wanting to name the baby. She comes up with some hilarious offers.. I think my favorite was cleaves happlee.

So for now.. "things are going great and they're only getting better, they're doing all right, they're getting good grades, the futures so bright.. I gotta wear shades!"

Sam is busy crawling, pulling to a stand at furniture and has even tried to take a few steps of cruising once or twice. There is some concern about how he is pulling to a stand.

He rolls over the tops of his feet which the PT says is indicative of hyperflexion of the ankle so we are not sure if he may end up requiring special shoes or ankle support. He is just weaker and this makes it easy to over rotate. He also splays his hips out a bit. I am just so happy to see him mobile. He does grow tired quite easily, but his endurance seems far better than it used to be. His speech is coming along slower but he is turning "da da da" into "daddy" and says "uh oh" and "yah" now as well as odd form of "mama". He tried to say "bye bye" the other day but it came out more of a "Babbeebe". He even makes a dog sound when he sees a picture of a puppy. He is using some sign language from time to time and seems to understand everything we say to him.

One of the biggest improvements has come with taking in small amounts of food. He is still not drinking fluid as it seems to hit him a little too fast but one day out of the blue he allowed us to feed him oatmeal by spoon... sooo exciting and things have been moving along faster ever since. We had gotten grits in earlier in the summer but that was short lived as he would sometimes choke and grew nervous and aversive again. We bounced from days he wanted to eat but would choke to days we wanted nothing in his mouth. He is now taking in bits of bread, whole packets of oatmeal, bits of some fruits and vegies. He does still get choked every now and again but does not seem to let that stop him from taking the next bite.

Even with continuous GJ feeds, he stills shows major interest in the foods we are eating and so now the new question is how to try to shift to tolerating more oral feedings. He does get distended and show belly pain from time to time, however, nothing like what happens when he is ill. He eats small amounts and then acts pretty saited and tired. I think eating actually takes alot of energy for him, so I also want to be careful we balance all the energy going out to the many new areas of development. I don't want anything to take a back seat. Although we don't know if this new wellness and development is a turning point that will continue with no turning back or if the mito experts are right when they say he will have many peaks and valleys and that we just need to enjoy these periods and make the most strides during these phases.. I just don't know.

Listing all those good things, I need to do a little end of the week venting since my week took a turn, starting with some craziness Thursday night. Sam took a downturn in the night with his breathing and we knew something was up so I made some calls Friday morning to get him into the Dr. While waiting to hear back, I had to take Sofie for her first dental appt. It turned out to be quite an adventurous morning as we first got lost finding the place up in the north part of our county, then we finally get there and she is so nervous that she throws up all over the waiting room floor.. yes - it wasn't pretty! Then I get a call that the Dr can get Sam squeezed in for a 10 am appt but I am too far away to drive home, pick him and the nurse up and make it. Thankfully, my mother in law was able to help with this but I hated calling her into it at the last minute. Then I get called back to meet with the dentist and it seems Miss Sofie, who fights brushing tooth and nail, has 5, (Let me repeat) 5 cavities!! I think I have had 1 my whole life! I felt like mother of the year! He must think I let her eat candy all day. On top of that, there is a flap of skin that may be an issue later causing a gap in her front teeth if not surgically removed. They said she has really soft teeth. Great!

Then we narrowly make it to Sam's appt, only to find that Sam looks better and is breathing farely okay. This is good but I know that Sam does this.. he will look fine and dandy one minute and then out of the blue sats are in the 80s and he is retracting and in pain again. The nurse is telling the Dr. how bad it was but I know he is thinking we are wimps. He then did find infected ears and upper respiratory infection, so Sam is back on antibiotics. We are pushing fluids and rest and hoping this little illness won't put him over the edge. He fluctuates with his symptoms but overall is doing a little better so I am hoping we caught things early this time. The noisy, wet breathing keeps me on edge but I think most of it is up high in the trachea area where it is so narrow.

After the crazy morning, I return home to find that the scheduled installation of the silly satellite TV thing is a mess and the sales girl has screwed everything up. We were trying to switch from the overpriced cable to the cheaper satelite but in the end will probably end up paying more.. We only ever had basic cable but for less money we were hoping to actually have more channels since we spend so much of our weekends at home. Anyways I was given the run-around, had to duke it out on the phone and 4 hours later it was finally all rescheduled for next week but by then I was at the end of my rope. Meanwhile, I was worrying about the major onslaught of rain on the way with the oncoming tropical storm Lee. FUN! It looks like it is going to pass over New Orleans west of us. I will be praying for those families. I am not too concerned about the storm itself as it is mainly a glorified rain storm, but of course it is happening right before our contractor planned to come out and repair a few leak issues.. You can't hold back the rain! He was supposed to come put up a tarp for us but did not show.. SO this is how I found myself shouting to noone in particular about crazy nonsense and how I hate TV and why do we need it anyways since we are way too crazy with the rest of life to fit in the greatly coveted college football that Jason is so sad to miss this weekend. Going without any TV for a week is hardly on my list of stresses but dealing with it did put me over the edge. Jason probably thought I was losing my grasp! A day of cleaning up vomit in public, sick babies, oncoming storms, installation people and dealing with endless automated phone junk along with driving all over carnation back and forth trips to and from bus stops, pharmacies and dr. appts will do that to a person. I was done! But on a good note... I vented and prayed about it all and found a few quiet moments to collect the fragments of the day and I have set it all behind me.

Mostly, I am a little concerned about power issues for the weekend since we don't have a generator and Sam can't handle heat and has medical equipment and.. is in the middle of an illness. His nurse had to use oxygen last night and my thoughts began to gravitate to what we would do if there were a long period without power. We only keep 4 tanks of oxygen on hand since we have an O2 concentrator that plugs into the wall and converts room air. Too late to think about that today, but I will need a better emergency plan for the next storm. SO my week summed up: I started out with the tune "gotta wear shades.." feeling all happy about a farely smooth start to the school year, but ended up: desperately needing a good umbrella to shield us from the mess falling all around. I am sure next week's forecast will be calmer and brighter..

Giant White Board and Endless Possibilities..

I think all mothers everywhere can agree that we get to celebrate a 2nd New Years Day each year. It usually arrives in August and is decorated with stacks of wide ruled paper, bright new boxes of washable Crayola crayons, new white socks, pencil eraser caps and all the fun of starting a new school year.

I was tickled pink to discover that this year's official school supply list was rather simple in comparison with the two full page list ($150) of Kindergarten items for Bella's school last year. Won't even tell you how much time was invested in tracking down every item last year, but this year I actually whipped through Wally World in under 30 minutes. One item in major demand this year seems to be dry erase markers.. 16 or so were required on her list.. which hovered on my brain as we fought parking lot traffic trying to head out with our goodies. What a clean and pretty thought to imagine my life as one giant white board with clusters of colorful drawings to depict the sunny and stormy phases of my life. What would life be like if we could just wipe away the unwanted smudges or seemingly impossible math problems we had somehow struggled through? What if when we didn't like the way things were going and we could just wipe the board off and start over? Would God want me to erase any of it or should I be writing it all with Bella's favorite writing tool.. the ultra permanent sharpie marker?

I look at the last 6 years since having our children and I think how much of it I want to lock up in a vault and preserve forever. How every little handprint sent home from preschool became most treasured belongings. Every first milestone brought such joy and excitement. Every smile an imprint on my heart. But the last year and a half have been harder and the pretty and wonderful parts have often been crowded around splotches of dark stuff. There are ugly scars there that I would like to wipe away sometimes. But then I think about how those harder parts, the messier areas of my white board, are actually what has made the sunnier parts and the big new developments of life all the richer. I felt this all too well as I walked Bella into her new First Grade classroom on the first day of school this week.

I was ever so thankful for God's help juggling everyone into a working, well oiled machine that morning. The girls were dressed by 6:15, homemade nutritious breakfast waiting to fill them with energy for the busy, full day that awaited them. The nurse also had a little one starting school so we arranged ahead that she would come a bit late after getting him off to school. This meant Jason would hang behind with Sam while I packed up Bella and Sofia into our van and off to their various schools. Bella was a bit nervous as all the girls she knew well from Kindergarten were in another class. I know she will love this new teacher and make friends in no time, but it hurt just the same to see her furrowed brow. But in true Bella style, her bubbly personality came through and the nervousness subsided when she saw the crowds of other kids entering school. By the time we made it down to her new class, she was chatting with the teachers in the hall and pointing out all the exciting things that she could not wait to do between those walls. She did not even turn to wave goodbye as she sailed into her new class, only pausing to give the new teacher a high five. I can't believe how grown up she is now! I stood back and tried to appreciate the moment. My baby does not need me as much as she once did.

I spotted many mothers crying as they left the building and I thought how I was there last year, but somehow have graduated to a different mental place. Now, I look at this day as a fresh start for everyone, a return to some routine for our household coupled with the endless possibilities and excitement of all that lies ahead. I think I have craved the quiet that happens when they leave in the morning. With the nursing in place, I hope to now have time and energy to meet my own goals for supporting Jason's business and still managing the "mom" and "wife" stuff.

Sofia was next to start class that morning and I did feel a bit more sentimental about her first day. This is the first time she will be gone a full 5 days a week. She has a wonderful VPK 4 teacher who was Isabella's teacher the year Sam was born. She lives right down the street and is the perfect mixture of educator and nurturer. Sofie's two closest friends share her class as well so I know the girls will have a great year!

As I drove on home, I reflected on all the summer memories we made this year. We went to the beach, swam in our pool, had fun playdates with friends.. even discovered we were expecting a new life.

Amidst all that, we found time to turn our Atlanta trip for Sam's medical appointments into a family vacation. And although there were some bouts of medical challenges for Sammy, he made enormous progress this summer! Overall, it was a nice summer for everyone. Those harder experiences are not going to mar my white board of summer memories. We came through okay and my guess is that God would not have us forget these hard times as they are what reminds us of how blessed we really are. I do selfishly want to erase anything difficult from life... but erasing it might mean we are less thankful, less hopeful and less willing or able to handle the next scribble scrabble that awaits us in this crazy life. For now I am justing working to move forward and enjoy every day.

In my prayers right now are a family that has just found out the dad has cancer and a friend who just suffered a heart attack and stint surgery.
I am also praising the marriage of a friend from highschool, who found love with someone I know will make him very happy. At the wedding, we had the privledge of sitting with several other highschool friends and it had been years since we had seen one of the couples. Since that time they have had 2 precious sons and endured some major, lifechanging challenges themselves. The wife had a kidney transplant this year and is in recovery with hopes that there are no complications or setbacks. We will have her and their whole family in our prayers with the onset of the cold and flu season, knowing the risks it poses to her health. God certainly places people in our path that can teach us and show us great faith and strength. I am thankful for all the friends God has brought into our path.