Tuesday, February 22, 2011
We love going to the nature center just to go for nature walks on our own and they have a little "museum" with some animals, some fossils, some displays of preserved bugs, furs, birds, skins, etc. The kids really love seeing the turtles and the snakes.
Anna caught sight of this owl and got very excited. She seems to love owls (I think because she has an owl outfit) and to say "hooo hooo!"
The start of the program was a demonstration of how trees work and grow that involved audience participation. Anna was quite happy to lend a hand wherever she was needed! She just got right in there introducing herself to anyone who cared to pay attention.
Next a quick explanation on how to identify sugar maple trees.
And then the history of how maples were tapped and how it is done today. Apparently there is only one sugar maple tree on the hundreds of acres in the Rancocas Nature Preserve currently and here it is!
The kids were so excited to see this old fashioned frill that they all wanted a try...including Benjamin! I got a very short video after he patiently waited in line behind much older children to get his turn at the drill.
I was surprised to see how steadily the sap dripped into the bucket.
The bucket filling up with the sap.
We each got to taste the sap straight from the bucket. It was very cool and basically tasted like someone had dropped a few drops of maple syrup into some ice water. Very refreshing!
After the visit to the sugar maple tree we were supposed to go back to the main building to watch a short video. But Benjamin was a little over-ripe and in need of a nap. So much so that when I had him sit on a little bench in order to give his nice folding chair to an older woman he had a five alarm meltdown and I had to remove him from the scene of the failed chivalry. Instead we made a quick stop at the area outside they were preparing to let the kids roast waffles over an open bonfire to then dip in some syrup they had made from their tree.
I was a bit bummed we didn't get to see the actual boiling down (or a portion of that as I understand it takes hours upon hours to boil the sap down) of the sap.
And it turned out to be a good idea to go to the fire early because this way egg allergic Benjamin was not bombarded with the sight of 40 children devouring waffles that he couldn't have. So they let us put some of the syrup in a cup and we all tried a taste of the syrup and then went home and took naps.
In a few weeks they are having a salamander program that we hope to go to
Wednesday, February 16, 2011
Tuesday, February 15, 2011
This is the perfect time for the young children, like mine, to play with snow. When there are just little patches around for them to dig in and pick up and feel (and taste). Much better for my little guys than trying to trudge through 2ft of snow!
And a frozen sand table is just as fun as a defrosted one apparently! The sand table and all its toys were literally frozen in time. Claudio and I realized that this winter came on so fast and strong that literally we were outside playing one day and the next we had a blizzard.
So everything was sort of left and frozen in some late fall assembly..
It was SOO nice to soak in some warm sun! And Anna very excitedly kept pointing up and saying, "Sun sun sun!!" It was as if the world came alive for this one day.
It was cold again today but the forecast shows that tomorrow and the rest of the week are going to be even WARMER!!! Even this snow loving momma is excited for a little respite of sunshine, warmth and outdoor play!
After outdoor play Ben and I got to business making some Valentine cookies. I have actually NEVER made cookies that were cut out and decorated! So I had a mix for gingerbread cookies that happened to not have any eggs in it.
And I whipped up some frosting with confectioners sugar and milk with the tiniest bit of red food coloring to make a pale pink.
And Benjamin was in charge of the M&Ms
Ben seemed to really like these cookies. He will very rarely eat any homemade baked goods, but he ate SEVERAL cookies!
And speaking of Ben. He is scheduled for an Upper GI on Friday. Prayers please for him. I feel fairly certain that nothing will be found, but I am just worried about how he will do with the actual test. He is afraid of doctors and all that stuff on the best of days. So prayers for our little guy!
Thursday, February 10, 2011
First of all there are literally thousands of reasons that a child might be receiving tube feedings, there are several different types of tubes, and several different types of feedings that children can get. I only know what we have experienced with Anna, which is an NG tube (nasogastric...which means the tube goes from her nose to her stomach) to receive overnight supplemental feedings (meaning she does eat by mouth during the day), with a premade formula called Peptamen Jr. 1.5 (this is simply a very high calorie dairy based formula).
Since Anna had surgery in October she has no major physical reasons for not eating enough to grow. She has some minor reflux issues and motility issues, meaning her stomach works slower than ideal. She takes medication to assist with these two issues. So the bulk of Anna's problem now is behavioral. We have no idea what she felt when she ate for the first year of her life before her annular pancreas was corrected. And then she went two weeks during her surgery recovery not able to take anything by mouth. So, now she is left with aversions to food and eating and other behavioral issues around food (I apologize to anyone who has ever had a meal with her!). Because of all of this she is unable to take in, by mouth, enough food to sustain herself.
Being small, or a low weight alone is not that big of an issue. This is a big misconception and something I hear all the time. People are constantly telling me about their child or grandchild and how they only weighed this much at this or that age. The issue is if your child is unable to maintain a growth curve. If they are consistently losing ground on their curve and/or completely falling off of their curve. This is what was happening to Anna. She steadily and ever more sharply was losing any measurable curve on the growth chart.
Some of the common questions we are asked:
How often does her tube have to be changed and does she ever pull it out?
Technically the tube can be used for 4 weeks. We have never made it that long for various reasons (puking...she has puked up the tube, it has accidentally been pulled out, the valves that connect the tube to her feeding pump have gotten loose and leaked or blown). And she is very good about the tube. She never messes with it.
Is she being fed all the time?
No, she is fed with her tube just overnight while she is sleeping with the use of a pump that she is hooked up to. She is currently getting about 35mls of formula an hour for 10hrs a night.
When you replace the tube how do you know that you got it in her stomach?
Before you insert the tube you measure it against her body to get an approximate measurement for the distance from her nose to her stomach. Once you have inserted the tube you use a syringe and pull out some fluid through the tube and test the fluid on pH paper. As long as it is in a certain range of acidity you are in the stomach and not in the lungs. Also they give you signs to look for. Obviously there would be a lot of coughing etc if it was in the lungs. We test her pH before anytime we use her tube.
How long will Anna have her feeding tube?
We are not totally sure just yet. Right now she needs to reach a certain percentage of her "Ideal Body Weight" so that she will qualify for an intensive 4 week feeding therapy program at the children's hospital. The therapy will be every day for 4weeks and the goal is to retrain her to accept food. After that she will receive regular (monthly) behavioral therapy. She will have the tube throughout her therapy. She will not be weaned from the tube until she is eating enough to maintain/sustain her own weight. Her doctors estimate that it will be at least a year with the tube. We are hoping she will weigh enough to qualify for feeding therapy by early summer. She has gained about two pounds since Christmas so we are getting closer!
And the most important thing to remember about Annabella is that she is JUST LIKE any other 18M old. She is lively, vibrant, mischievous, adorable, gorgeous, smart, silly, sweet, and healthy. The only difference is she needs some help eating.
Grandpa Bob and Grandma Judi got Ben this "bouncer" (that is what he calls it) for his birthday! It arrived in the mail this morning and I put it together (mostly myself!!) while he napped. He will likely be eating, sleeping, breathing the trampoline from now on LOL!
This is definitely great for the cold days when we can't get out to burn off all that little boy energy!
Monday, February 07, 2011
Outside my window... Today was a warm and balmy 50+degrees!! I actually had our door open for a little while today just to let some fresh air circulate! It was a nice treat!
I am thinking...Nothing inparticular. About how tomorrow is Tuesday, my least favorite day of the week. The day Claudio works in the office. I am thinking about snuggling (and snoozing) with the kids after their naps today and that I am so lucky to have that time. I am thinking about what to make for dinner tomorrow night.
I am thankful for...Dr. Adzick, Anna's surgeon. We saw him today for a follow-up and he said that unless something surgical comes up he does not need to see us again. He is a wonderful doctor and absolutely loved Annabella. So we will miss him (and the wonderful NPs that work with him) but are glad she was cleared. One less thing to worry about. She was weighed today and she was 19lbs6oz!!!!! Last Thursday (so four days ago she was 18lbs6oz....so we are splitting the difference and assuming she is around 19lbs (all of these scales are different). Whatever the exact weight is we are so thankful she is GAINING!!! And I want to get to the feeding therapy part so that we can FINISH it because those are going to be an intense and difficult 4 weeks for everyone.
From the learning rooms... puzzles puzzles puzzles..
From the kitchen...Lots of odds and ends leftovers from Ben's birthday.
I am wearing... jeans, a green floral shirt and a black cardigan.
I am going... get the kiddies ready for bed in a little while.
I am reading... Confessions of a Prairie Bitch (a memoir by the actress that played Nellie Oleson).
I am hoping... to become rich overnight ;)
I am hearing...Anna and Ben. Anna is "reading" a book and saying "ding dong ding dong". Ben is playing with trains and pretending my leg is a tunnel.
Around the house...I got most of the mess from Ben's party cleaned up. I need to mop the floors, but everything else is cleaned and mostly away.
One of my favorite things... my bed.....
A few plans for the rest of the week: Once again nothing planned really. Just the usual stuff in the usual order.
Here is a picture thought I am sharing:
Ben and Anna dressed in some new clothes for Church.
Sunday, February 06, 2011
On his birthday I really do love to remember the day leading up to his birth. It was such an exciting time...waiting for him. And labor and delivery went calmly, smoothly, with a little stubbornness at the end for good measure. Much like Ben lives his life. I find the same with Annabella.....her labor and delivery very much mirror her personality and her "ways". I can remember my fears, my thoughts, my reactions, and my excitement. I can remember the first time our eyes met in the dim light....even then quiet but in inquisitive! *sigh* it truly does go so fast....
Here he is on his birthday morning opening some little presents. It was the first time he really understood the idea of receiving presents and opening presents. He was very exciting to tear the paper off and see what was inside. Even Christmas a few months ago he didn't quite get it.
He got a new CD to listen to. I put a CD player in the playroom downstairs and now he doesn't go down there without putting on a CD first thing! He loves books or stories on CD and music.