Sunday, October 31, 2010

Fun with Christopher

We have been concerned about Christopher's poor control of his lips and tongue. We know it is all about the poor muscle tone that goes along with Down syndrome. We have been working on improving his posture by playing with toys that have him reach above his head. This strengthens and lengthens his back muscles. We also run our fingers down his spine, to tickle him, as a reminder to sit straighter, when he is slouching. I am delighted to say his posture is much better. He is standing so straight and tall....most of the time, now. The posture has a lot to do with the ability to keep the mouth closed.

We also remind him to close his lips by making kissy noises at him and showing him with our fingers how our lips are closed. But he was still having a lot of the tongue protrusion and drooling. This made me sad. I do not want others to avoid him due to this unsightly flaw. So, I decided to do some studying.

I came across an article that talked about how children/toddlers with Down syndrome should not use a spouted sippy cup. This was a shocker for me, as the OT we had through Early Intervention and the feeding specialist though the Cleft Palate Clinic both insisted he use a spouted sippy cup. With the combination of his low muscle tone and the cleft palate, we had to search to find a sippy cup that would work for Christopher. It was not cheap! but it worked, and he was able to get his nutrition and hydration. Little did I realize it was causing him problems in the long run! With a spouted sippy cup the tendency is to have the tongue out beneath the spout.

We are now working on replacing the sippy cup with a cup that has a soft rubber straw, which we cut to make less space for him to wrap his tongue around. We bought this from Kmart, in the housewares department. If we were unable to find a suitable cup locally, we would have looked into ordering a "honey bear" cup. I have discovered that many times a simple, inexpensive product that is easy to find in department stores, works as well as the expensive professional products.

I am excited to report that after one session with the new straw cup Christopher is demonstrating much better tongue control and lip closure! We plan to work on it at meal times, after he has eaten his food, until he is using it, instead of the sippycup for all liquids.
The other things we have been using is a kazoo, and whistle. These take lots of pucker power and are lots of fun. My husband plans to pick up some Thomas the Tank train whistles in one of the shops, at the company where he works. These come in a couple different styles, and vary in ease of use (and price). My days will be filled with lots of noise, but it will have a purpose.

Christopher's Sunday school teacher shared with me today how Christopher loves music time. This comes as no surprise, as he dances and sings and does hand motions at home. Today, they were deciding what to do next in his SS class, music time or snack. Christopher immediately began placing the little chairs in the straight line they always set up for music time. I guess he made it clear what he preferred to do next.

Recipes, as Promised

Our all-time favorite pumpkin recipe is:
Pumpkin Cheesecake
Preheat over to 350
Crust:
1 1/2c graham cracker crumbs
1/3 c melted butter
1/4 c sugar
Press into bottom of 9in. spring form pan, bake 6-8min. Cool 10 min.

Cheesecake:
3 eight oz pkg cream cheese
1c sugar
1/4c brown sugar
2 eggs
1 can (15oz) pumpkin (or equivalent of home processed pumpkin puree, I think it about 1 3/4- 2cups. either way won't make a lot of difference in the finished product)
2/3c evaporated milk
2T. cornstarch
1 1/4tsp. cinnamon
1/2tsp nutmeg
Pour over crust and bake 55-6o min til set in middle, but still moves slightly.

Topping:
16oz sour cream
1/2c sugar
1 tsp vanilla
Pour over cheesecake and bake 5 min.


Our newer favorite:

Pumpkin Torte
Crust:
24 graham cracker sqs. crushed
1/3c sugar
1/2c butter
Press into 9x13 pan

1st layer:
2 eggs, beaten
3/4c sugar
8oz cream cheese
Pour over crust and bake at 350 for 20 min. Cool.

2nd layer:
2c pumpkin puree
3 egg yolks (hang on to those whites you'll need them later)
1/2c sugar
1/2c milk
1/2tsp. salt
1T cinnamon
Cook til thickened and then add:
1 envelope unflavored gelatin dissolved in 1/4c water
Cool. Then beat the 3 egg whites left over from earlier with 1/4c sugar and fold into pumpkin mixture.
Pour over cooled crust.
Top with Cool Whip, or sweetened whipped cream.
***Yes, I know this recipe is disgustingly rich and sweet. That is why we only make it one time a year! But believe me, your family and guests will LOVE it! it is worth the work!!


Pumpkin Pie:
1 3/4 cup pumpkin puree
1 T. flour
2 eggs
1/8 tsp. nutmeg
1/8 tsp. cloves
1/8 tsp. cinnamon
1/2c sugar
1 1/2c milk
1/4 tsp salt
Mix everything except milk til well blended. Gradually pour in milk. Pour into an unbaked pie shell and sprinkle with additional cinnamon, if desired. Bake at 375 for 50-60 min. Makes 1 pie.

Sometimes I use Pillsbury crusts, but usually make my own from scratch. If you need a pie crust recipe let me know and I'll post mine.

I make pumpkin pie for my 2nd daughter, Allura. She likes pumpkin pie more than the cheesecake and torte. She is my skinny girl who does not enjoy rich cooking.


I hope you enjoy these recipes and maybe make one of them your new holiday traditional dessert. And, as always, if you use any of my recipes, let me know how it turns out. I will try to share some pictures of my goodies as I make them for the holidays.

Friday, October 29, 2010

In the Kitchen

It has been a busy time of canning for me here in the shoe.
I have been making applesauce and canning it. So far, I have made about 40qts, I plan to make more. For those who have never had homemade applesauce, you don't know what you are missing! It is much more flavorable than store bought. I have to chase my children away while making it, or they will eat it as it is coming out of the strainer!

I like to use a variety of apples, so my sauce is never exactly the same. The last batch of apples I got was Stayman. I did not remember them being so dry. So, I decided to save out some of the sauce and make some apple butter. It has been many years since I've made apple butter. I love the aroma of the apples and spices filling my house. Since the apples were not especially juicey, it did not take as long to cook down either.
If you want to try making apple butter this is how I made mine:

4lbs apples (about 2qts sauce)
3cups sugar (you can add another cup if you use tart apples)
2tsp cinnamon
1/4tsp cloves

Simmer on stove until butter can round up on a spoon, and when placed on a cold plate does not seperate.
make sure you stir frequently, to prevent sticking to the pot.
If you accidentally let it cook til it is too thick, you can add a bit of water or apple cider.

Ladle into jars, leaving 1/2in. head space, process 20min in boiling water canner.
This makes about 4pints.

The other thing I made this week was sauerkraut. I cut up two huge heads of cabbage, packed into qt jars, added 1 tsp salt to each jar and filled with boiling water. I covered each jar with a canning disc and ring. Two heads made 15qts. Now they are sitting in pans in my basement to ferment, which will take a few wks, depending on the temperature. I love the flavor of homemade sauerkraut, it is naturally sweet. I can hardly wait to eat it!

Yesterday, I finally brought in the pumpkins my dad left on my back porch several wks ago. They were the large gooseneck type. I peeled then, cut them up and boiled them til soft. (They only have a few seeds in the rounded fat end, which I removed while cutting them up.) After they were soft, I drained them well and put them through my strainer. Then I packed the pulp into quart jars and processed in my canner for 3 hours. This is the first time I ever canned them, I always froze them in the past. But my freezer space is limited now, so I needed to come up with another idea. My house was very steamy by the time the pumpkin was done. I canned 6 qts, and used another quart to make into pies for dessert last night.

The pumpkins Dad gave me were very hard. I'm not sure why. I had a very difficult time peeling them, even after sharpening my knife a few times. I cut my hand three times in the process of peeling. I was so glad when I finished peeling those pumpkins! The cuts are very tender today, but my jars of pumpkin look very pretty lined up on my basement shelf.

I will be sharing some recipes for good things to make with pumpkin in the next few days. I have some little boys who need my help with math now, so I have to run.

Wednesday, October 27, 2010

Josh and Christopher

This has been a busy week. Josh has been struggling with an eye infection, which required the additional eye drop that needed instilled six times per day. Originally, it was to be 4 days, when the redness did not go away, I was to continue them and have him seen today. So, today we made the long trip to his pediatric ophthalmologist.
Turns out the eye muscle surgeries Josh had in the past have made it more difficult for Josh's eye to clear inflammation. It is more sensitive than it would be otherwise. I thought that eye was rather tough, since it can handle the not so gentle contact change each week. Not that I try to be rough, it just takes some manipulating to get a contact lens out of someone else's eye.
The plan is to leave the contact lens out of Josh's eye til Sunday. If it is still red, we will call the ped. ophth and see what he thinks.
Just a little perspective in regards to Josh's vision. With his contact lens, his vision is 20/40, which is great considering his diagnosis and all the complications. Today was the 1st his vision was really measured without the contact lens. His vision without it is 20/800. Amazing what a tiny piece of silicone can do! (20/200 in both eyes is considered legally blind.) Is is any wonder that Josh has been very tired this week and easily irritated? He is having to work really hard with his contact lens out.

October 2009, Josh went for a routine exam under anesthesia. We had been through many routine EUAs. They are basically an eye exam under anesthesia, so they can also measure eye pressure and get a good look at the optic nerve. These things can be hard to accomplish with little ones. I went to the surgical center feeling very confident and light hearted, never thinking they would find anything wrong, it was one more thing on my 'to-do list' before I was due to give birth to Trinity. That was the day Josh was diagnosed with aphakic glaucoma.
Since that day in October, I have felt stressed about Josh's eye health. Any bit of redness is cause for concern and sleepless nights for me. Acute glaucoma, or severely elevated eye pressure, has the similar symptoms as an eye infection. Redness, pain, and sensitivity to light. There is no way of knowing for certain, unless we take the long trip to have his pressure tested. Or we start abx drops and they cause the symptoms to go away rather quickly. I often feel like I will never have peace. I feel like I am waiting for the day the meds for glaucoma stop working.

On to Christopher. He was scheduled to have tubes put in his ears this past Monday.
I had everything ready, clothes laid out, special blanket and favorite Elmo toy packed in his backpack. His sippy cup was ready for his post-op clear liquid. Gene said he would wake me at 5:15, and if he overslept, Sarah had her alarm set. (I am not an alarm person, it gives me a headache.) Well, Gene had a cold and took cold medicine the night before and overslept. Sarah turned her alarm off and fell back to sleep. I awoke in a panic at 5:45, with barely 30 mins to get ready and rush out the door.
After I got myself pulled together, hair washed and dried, make up on, dressed, I went downstairs to nurse Trinity. While I was nursing, Sarah was getting Christopher ready to go. I was almost finished when I realized Christopher was undressed again. When I questioned Sarah about it, she said he got banana on his shirt. She fed him a banana before we were to go to the OR!
I had to reschedule the procedure. He will be having it done Nov 1st. When I called the scheduler, she talked a bit rudely to me. At first, I was offended and almost spoke rudely to her. But then I realized we probably did look like goofs since we fed our child before a scheduled surgical procedure. Oh well.
I can laugh about it now, but I was not finding the humor in it on Monday. I know it was an honest mistake, and she had love in her heart for her brother.

Sunday, October 17, 2010

Getting Older

Today is my 44th birthday. It seems like only a couple years ago I was 22yo and eagerly awaiting for the birth of my first child. Now I am the mother of 10 children.
When I was 22yo 44 seemed very old to me. My mom and my MIL were in their 40s and they were both old. Looking back, I know they were probably not as old as what I thought at that time. But in ways, I still feel they seemed older. Neither one had had a baby in over 20 years. They both talked about their "female troubles" and their aches and pains.
I feel like my children are keeping me young. Old women don't have babies, right?? I don't have "female troubles", I think this is due to my female organs being used the way God intended, rather than artificially kept barren after a certain number of children. I don't have time to think about my aches and pains, I wonder if I even have as many as my mom and MIL. I would think being busy with all my babies keeps my body in better condition.
My older daughters make sure I don't look like an old lady. If my eye brows get a bit too furry, they will point this out to me, even if we are in the middle of the grocery store when they notice. LOL! Sometimes, I let my eyebrows go a bit, just to check to see if they will notice. They notice.
They also make sure I stay on top of my gray hair. This is easier now that I have a daughter in beauty school. She also makes sure my hairstyle is not old lady-ish. Although, she enjoys getting me in her chair and styling it like an old lady, just for laughs. She doesn't leave it that way, of course.

In some ways, my teenaged daughters make me feel old. I'm not dillusional, I see the wrinkles on my face and the lumpy body that has birthed all these children. I know my blond hair now comes from a bottle. But they also keep me sharp. I enjoy talking with them and with their friends. It keeps me from becoming stagnant and stuck in my ways.

My husband took me to dinner last evening. We had Trinity along with us, as I do not leave my nursing baby behind. The waitress asked if we were babysitting. I need a reality check from time to time. This keeps me humble. I know that 44yo is not the typical age for a woman to have a 10 month old baby. We explained to her that Trinity is the youngest of our 10 children. She exclaimed, "Wow, you look great for having 10 children." I'm not certain this is a compliment or not. What is a woman with 10 children supposed to look like?! Does anyone from our current era even know?

Forty-four finds me with much to be thankful about. Ten healthy children. A husband who still loves me even though I'm 44yo:) Jesus as Lord and Saviour of my life. Just naming the important ones.

Tuesday, October 5, 2010

At the ENT

Christopher saw the nurse practitioner at the Ear, Nose and Throat doctor's office today.
His hearing tests were not so good. There were flat lines on the graph where peaks should have been. I knew he was not hearing as well as he had been.

The tube in his right ear was out, and laying in his ear canal. The one in the left ear is in, but protruding at an odd angle. The NP thought maybe it was causing irritation and was the reason for the ear drainage.

Christopher is now on ear drops to clear up any infection that is remaining after 10 days of oral antibiotics. He goes back in 2 weeks. At that time, they will make sure the infection is all cleared up. We will also sign pre-op paperwork for more tubes to be placed in his ears.

In the meantime, I felt so sad because Christopher will be missing out on so many sounds.
We went to Joanne Fabrics on the way home. One of the ladies that work there goes to church with us. She wanted to play peek-a-boo with Christopher from a couple aisles away, and poor Christopher had no idea anyone was calling to him. He was sweetly oblivious.
We also went to the grocery store. While I was there, I had one of those moments where I felt like God had tapped me on the shoulder. This time, I am certain he was telling me I have so many things to be thankful for and should not be feeling sorry for myself.
There was a little boy in a cart with his little brother. The thing that stood out about the little boy was the big scar across the back of his head, and his scalp that was completely hairless. He was so fragile looking, and pale.

My little boy with Down syndrome, is only having his fourth set of tubes placed in his ears. This is nothing compared to what that other mother has been going through with her little boy. I had to fight the tears as I finished my shopping.

Sunday, October 3, 2010

Christopher's Day at Church

Christopher enjoys going to church. He doesn't know much about God, or worship yet. But he knows he is among people who care about him.

When we arrive at church, we help him out of his carseat. He walks across the parkinglot, holding my hand, or the hand of one of his older siblings. At the door, he stops to shake hands with the greeter. We have a rotating schedule for greeters, so it is not always the same person. Their faces often register surprise and joy, as Christopher extends his hand to them.

Christopher knows the way to his classroom. He recently moved up to the next class, and will get a bit confused as he passes the door to his old one. He enjoys going to children's church. They have a playtime, with many things we don't have at home, such as a sand table, and tiny toy kitchen.
They serve a snack to the children. I was concerned about this, since Christopher cannot bite and chew as well as typically developing children. But the teacher and helpers do a good job helping him and making sure he is not just cramming the food into his mouth.
They have music time, which, I believe is Christopher's favorite thing in class. He enjoys music and loves to clap, dance and play rhythm instruments. The teacher expressed to me today how much she enjoys seeing Christopher participate in music time, how his face lights up with joy.

Most children Christopher's age have a difficult time with sitting still for storytime. We have always made it a point to work with our little ones at home, so they are better able to understand and cooperate during children's church.

After church, Christopher likes to visit his favorite people and places in the building. He seems to always manage to go to the stage. There are many interesting things there, and he is drawn to it. We had a puppet show and a play in the recent past, and Christopher will sit on the chairs and clap excitedly, like he is hoping for an encore.

Our church is at the bottom of a long hill, and usually, by the time we are at the top of the hill, Christopher is sound asleep. It has been a full morning of fellowshipping with others and, in his own unique way, of worshipping the Lord. I believe in my heart that the Lord is pleased with Christopher's worship.