Wednesday, October 13, 2010

Rainy days

I am a sun lover. The hot rays streaming to earth and warming my face while a balmy wind blows is my idea of heaven. When the sun is out I'm the energizer bunny. I bake, sew, play with my kids, catch up on all my house work, make plans for the week and just in general feel great. Or....bracing myself....rains. For me, it's like the batteries get removed. I just want to sleep all day. I've started learning how to channel this. My Grandpa always said that a rainy day is too nice to be wasted on anything but drinking coffee and reading next to a hot wood stove. So I start the coffee pot right away on days like this and then put the kids in the bath tub. I catch up on some reading even if it's just a magazine. This usually wakes me up enough to be somewhat productive for the rest of the day and at least feed the children. Because we live in a state that is chronically cloudy in the winter and will often spend entire weeks without letting even a shimmer of sunlight through the gray skies I have to reinvent myself every fall. This fall is going to be no different because life goes on despite dark dreary weather especially with a Mito child. Boo still needs the same amount of care on a cloudy day as a sunny one. The positives are the cooler weather which he seems to tolerate better. Of course cold weather means sick season around here too which is reason #635 why I do like winter (cold being #1 and cloudy being #2). In fact in my opinion there are only 2 positives about winter...the snow is beautiful and I LOVE the Holidays! We spend from Thanksgiving to Christmas baking, sewing, partying, singing and just in general loving everyone. Although, the past two years the party attending has been preceeded with "is everyone there going to be healthy?" and Boo and I have inevitably had to be left out of a few because there tends to be someone every now in then that insists on coming even though they are sick. I'm not resentful though, I was probably guilty of the same at one point or another not realizing the impact it might have on someone else. It's all part and particle to having a Mito child. If I could put Boo in a bubble from October 1st to April 15th and have him enjoy it I probably would.

For today though, I'm going to rally and do some sewing while the kids take their naps. Either that or bake some more fresh bread. With a recipe this easy why not!?!

Rainy Day Bread
Mix together in bowl:
6 1/2 cups flour
1 1/2 tablespoons salt
1 1/2 tablespoons yeast
Add 3 cups of water and stir until mixed. It will be very sticky. Set in bowl for two hours or overnight.

Grease hands and shape into 2 long loaves on a cookie sheet covered in parchment paper and bake at 450 degrees for 30 minutes. Add a pan of water to the oven to give a great crust. Pull out of oven and let cool near completely before slicing to allow crust to turn soft and chewy. Enjoy!

Sunday, October 3, 2010

My Gray Hairs

Actually they are white...about a dozen lovely white hairs sprouted in my bangs about 1 month after Boo was born and haven't gone away. I call it a stress mark. I'm sure after the last couple weeks I'm going to sprout some more although this time I've been chowing down B-complex like they were jelly beans. See this is what happens to you when you have a medically complex child that can't seem to make up his mind about whether or not he is going to be healthy or a bit unstable on any given day. Last week we were inpatient for 37.5 hours because Boo decided to sleep with his oxygen saturation levels (O2) between 90-95% for several hours. This was too low so I was advised to take him in. This was of course at 3 o'clock in the morning, hubby was out of state for business and my two daughters were sound asleep. I called my sister who woke her husband who would meet me in the ER parking lot. I packed a small bag for Boo and I and  woke the girls who handled the situation like champs. (As far as they know doesn't everyone get woken up in the middle of the night because their brother has to go to the hospital?) Of course I carried their half awake little bodies into the car and didn't think about things like shoes or extra clothes for them! Once at the hospital and done with the kid exchange we checked in and were taken back to a room within a couple minutes. Boo was fine once awake of course and the resulting chest X-ray and IV placement was enough to get him screaming. Once he fell back asleep they started to watch him while waiting for the labs. He did fine! After a few short dips to 94% he got up to 97 and stayed there. They thought that perhaps some mucus from the small lung infection they found may have been blocking his airway just enough to cause problems but then got cried out. All the same they admitted him for observation because he has a bad habit of being discharged and then coming back 2 days later to be admitted for a week or two. He was extra sleepy for the next day but otherwise did fine and they sent us home.

At home he continued to do well until a couple days later when he developed a minor cold. Again his O2 was tanking at night but this time we just kept waking him up a little or rubbing his chest. It's kept us out of the hospital. They downloaded the home monitor only to find out NO EVENTS!! I couldn't believe this so after much discussion found out from the nurse that the perimeters for recording O2 events was set WAY too low. The new machine we have is set higher but not as high as I'd like to see. According to an ICU doc he should not have O2 levels less than 94% for more than 3 hours so it would make more sense to me to set it to alarm at 93% than at 90% so we can tell if he is sitting low.

Anyway, this post is getting long so I will summarize it to say that Boo had 2 more terrible nights with frequent drops into the mid to high 80's% which resulted in my husband and I talking about the possible need for night time O2 supplementation and then comes along last night where he stayed above 97 the WHOLE NIGHT! I don't know if it's just  he's getting over  the cold now or if something else set him "off" for a while but now it's gone or what it could be. He's also started to eat cheerios again by the medicine cup full vs 3-4 at a time so something is getting better. We will of course have to continue monitoring him to see if he has more good nights in a row or goes back to what he was doing before which has been an up again/low again cycle for at least a month now.

In other news hubby and Pudge have come down with colds now so we'll see how healthy we can keep Boo since the house is so small "quarantine" is not an option like it was when we had two floors. The good news is that because everyone else needed to stay home just Princess and I went to church this morning...well kinda. She went to Sunday school, I ran the coffee window and we left after she was done. We stopped at our favorite coffee shop on the way home and split a muffin and drink. It was great to spend some one on one time with her again and it gave her a chance to ask me all the questions about Mito that she's been accumulating since we talked last week about a dear new angel named Samuel who had the disease. She's so smart and doesn't even know it! (I mean really, how many six year olds do you know that learn about sub cellular biology?) Well, I suppose this is plenty for now. I'll try to be more consistent with this new blogging thing so my posts don't read like a book all the time! (what can I say...I'm wordy!)