Saturday, August 29, 2009
Wednesday, August 26, 2009
Today I put a prayer button for Megan on my sidebar. Mostly, these buttons are for giving to those who have a website or blog and want to display it to remember to pray or tell others that they are praying and to spread the word.
I was hesitant to make a button at first because I have been very private about my feelings toward Megan's illness. And, for a long time, her health was very stable - the previous 2 1/2 years to this April were "hospitalization free." It is easier to place her ultimate prognosis on the back burner, so to speak, when everything runs status quo for so long.
While we are celebrating the fact that Megan has set a new record (5 weeks) since her last hospitalization, she is by no means "better." She is towing a very fine line healthwise. Megan has days where she sleeps most of the day, days where she is awake and uncomfortable most of the day, days where she is alert most of the day, and, every now and again, we see a spark of the smiles we loved in April when we found out that we would indeed be bringing her home again.
Megan has also been fighting infections the entire five weeks we have been home from the hospital. She has had two urinary tract infections (which she is taking antibiotics on a long term basis for now), a respiratory infection, and gastrointestinal side effects of taking antibiotics regularly.
Megan's pulmonologist told us on August 7th (when we discussed the sleep study) that if we are going to consider placing a tracheostomy to help keep Megan's airway clear and use the c-pap machine for her apnea issues at night, now is the time to do it. After much consideration, we have decided that this additional invasive procedure will be very hard for her physically and give her yet another outlet to invite infections.
We are confident in our abilities to carry out Megan's care regimen as it is and want to help her stay as comfortable as possible for as long as we can. Megan is currently having some pain due to her scoliosis and is very uncomfortable when she is placed into a sitting position. She even voices her discomfort when we reposition her on the couch or in her bed on her bad days.
We are looking into any non-invasive ways to help Megan reduce her pain level and are trying to help her stay as agile as possible. We do not want Megan to suffer. Sometimes her cries are more than I want to hear. Her cries no longer sound like a "Mommy, I scraped my knee" type of cry. They are much more intense.
Please pray that Megan will have the strength to endure whatever she may encounter, that she will not spend the rest of her time with us in pain, and that we can make as many memories as possible with our precious gift.
Pink has been growing on me quite a bit too. But, I have another site that is mostly pink - and serving me well.
Yellow is Megan's favorite color. I soooo wanted to find a yellow motif that would work for my blog template on a long term basis.
Alas, I found this scrapbooking kit that I fell in L-O-V-E with. I went to work on this header - and noticed that it was...
It seems I go round and round with my favorite colors.
Tuesday, August 25, 2009
I have neglected this blog for a couple of days because I was writing a tutorial for making doll clothes on my other blog. I just published it here. It took a little longer than I thought it would. If anyone sews, you should let me know if you followed the instructions well. I am also having a giveaway on my other blog for a gift certificate to my doll clothes store.
In other news, Monica is doing very well at school now that she is in 3rd grade.
And, Megan is holding her own as far as staying out of the hospital goes. She has now made a new record of more than a month since her last hospitalization. Previous to this, the most she had stayed out of the hosiptal since April 2009 was three weeks. She is by no means ready to go back to school. However, we are hoping that the longer she can stay out of the hospital, she will gain enough strength to go out in public again with the family. She was able to attend church on Sunday and we were so thankful to be able to go somewhere as a family again. Hopefully, this is something we will be able to continue.
Saturday, August 22, 2009
And, the other half.
These two glossy prints are coming right at you!
Question: I thought you said you didn't scrapbook? I didn't until I just found digiscrapping. That's right! I don't have to write, cut, paste, make a mess all over, not be able to find what I'm looking for... (My sewing already serves those purposes). But, digiscrapping is very neat. All I need is my computer - my pictures are there, the "papers" are loaded in, my "stickers" are loaded in, I can move them around as many times as I want without ruining them, and I can use any font possible. A hobby I can neatly fit into a small little flash drive - now this provides a way I can scrapbook! And, I can print, frame, and put on my walls instead of a book, unless, of course, I make too many!
Thursday, August 20, 2009
Tuesday, August 18, 2009
Monday, August 17, 2009
It's been a few weeks since I participated in the Not Me! blog carnival because we have been running all over Indiana for doctors appointments and other family business. Also, because of all the running around, when my daughter's nurse came one day and said, "How are you today?" I did not say, "Well, here today and gone tomorrow. Doesn't my house look like it?"
Another day (before she even stepped into the house) I did not say to her, "All this traveling has gotten the better of my house once again. It looks like I will be working here all day. Pleeeaaase don't report me to the authorities."
So, in an effort to make my packing and unpacking easier and less messy I did not devise a plan to bring home all of our suitcase items already clean, keep them packed, and place them where they can be easily located. I also did not stock the van with all necessary medical supplies possible to prevent the checklist behavior that occurs when you try to pack a child with special needs for an overnight trip (suction machine, nebulizer, vest machine, portable oxygen, 15 medications, catheterization supplies, diapers, wipes, bed pads, etc.) Yes, we really pack all that stuff every time we spend the night anywhere. My new motto has not become "if it won't spoil or overheat it can just stay in the van."
Finally, when my nurse called me this morning at 7 something to say she was sick, I did not think to myself, "Great! Today is our last day to sleep in before school starts tomorrow. I am going to go get Megan's medicine, diaper change, and breathing treatment done so I can go back to bed and sleep in." Nope, not me!
Thursday, August 13, 2009
Wednesday, August 12, 2009
... and Megan couldn't keep herself upright. Does this look comfortable to you?
This was the last person to sit in the chair before we left it in the hallway on the way out the door.
(ahhh, my first blurry background. I'm sure I'll get better at it with practice.)
...and in with the new!
Very much better!
This new chair is more comfortable, shaped to fit her body**, and has a sturdier new frame. We started the process for this new chair last October. So, you can see why it is so exciting. When you finally get the things you need, you really appreciate it. Waiting in anticipation has that effect on you.
**Shaped to fit her body The back of the new seating system in this new chair is filled with this foam stuff that came as separate liquid compounds and creates a type of soft (yet sturdy) foam that is poured into the back of the seat and molded to fit Megan's curves to give her additional support since she has so much trouble keeping herself upright. This is a picture of what it looked like in the bowl after they poured what they needed into her chair.
And this is what it looked like several minutes later when it finished growing. It really made a mess in the box. See how shiny it is. It was actually very sticky and when I put my fingers into it - you could see the imprint in the top. It sure is amazing what technology brings to everyday life.
Tuesday, August 11, 2009
Not if she started it.
Yes, that's the luggage rack of the place we are staying for Megan's appointment Wednesday morning. Staying in hotels does have its perks.
Thursday, August 6, 2009
The intent of having a sleep study is to measure how well a person is breathing during sleep. Because Megan's diagnosis includes energy issues and how well her body is able to make the chemical reactions necessary in order for her bodily functions to (well) function, sleep for restorative purposes is very important for Megan to be able to "recharge" her short battery life, so to speak.
For this particular study, we were curious as to how well her oxygen levels stay at healthy levels throughout her sleep, how often she has episodes of apnea (momentary stops in breathing), how deeply she breathes, and how much work her muscles are performing to take breaths.
Megan's sleep study was in Indianapolis because that is where her pulmonologist is located. (FYI, all of her specialists are in Indianapolis.) Anyway, our appointment was for 8:00pm. We got there and settled in, met the technician who performed the test, and got started hooking Megan up to the machinery needed to measure all of these important things about how she breathes during sleep.
When we got done getting everything ready, Megan looked tired. And, I said to myself, "WOW! She is actually going to go to sleep."
I think that was my mistake. Because 30 minutes later, she was not resting anymore. I mean, really, we expect kids to sleep the whole night looking like this.
Those are the hands of the lady that came in every few minutes - all night long - to try to fix her probes. Remember I said that Megan got agitated?
You can't count them very well but, yes, there are three things measuring oxygen levels inside her nostrils, with tape all over her face, and brain wave probes all over her head. Plus, all of it is bound up like on one of those cartoons where the character has a toothache. Also not pictured are two bands, one around her chest and one around her waist, to measure how her muscles move when she breathes.
Why on earth would they have the nicest parent beds in the hospital in a place where sleeping doesn't occur?
Well, the sleep study ended at 5:30am. (Yes, because the techs work from 7pm to 7am and they have to make it look like you were never there and get everything ready for the next patient by then.) I called Ken to come get us (he and Monica were at a nearby hotel) and Megan was still kind of restless. Then, we got her in bed to get some rest before check out time and our trip home. Just after her head hit the pillow, Megan looked like this.
Why couldn't she do that just hours before?
Oh yeah, I remember now. She looked like this.
Monday, August 3, 2009
Yes, today is our 13th Wedding Anniversary. (Just saying that makes me feel old, in addition to the fact that our firstborn daughter will be 10 years old in October - just two short months from now!)