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..

1 comment:

  1. Sam is looking awesome!!! You are super mom, keeping your growing family in order and happy.
    Hope to see you guys in October!