Water Fight!

What else do you do on a hot summer day?

Norah loves playing at the sand and water table.

I loved how Grant was able to sneak up on Jason and spray him. Grant was so proud of himself. Norah didn't want to let go of her water gun once she had it.

I love spending time in our backyard.

Oh Norah...

I am worried about Norah. While I worry about Norah every day, this worry is different.

Today we saw Norah's pediatrician and shared with him all of our concerns about Norah that have developed over the summer. How things have emerged that previously haven't been a problem before or have gone unnoticed because she was an infant. Some things just aren't as noticeable until your get to the point where a child should be able to do it without difficulty or can tell you it's different than the norm. I am not willing to sit around letting little things turn into big things, or to see Norah lose progress and abilities she has previously been able to do.

Our pediatrician listened to all of our concerns, really listened, probably got behind seeing other patients because we discussed and reviewed everything listening. He referred us to new doctors, who practice outside of the children's hospital but are still affiliated if Norah was to need inpatient care. He said that he has seen some of these doctors for his own kids, that makes me feel better. I left his office with a plan and feeling better about my concerns.

The plan, call the neurosurgery team and relay all the concerns, stressing Norah's appointment should not be delayed for another month. (It was cancelled and no appointments were available until the end of September). They agreed with all of our concerns so Norah's MRI for next week is still on with appointment to follow after she wakes up from the sedation (amazing how that appointment reopened). Meanwhile, Norah will have an upper GI x ray to see what kind of swallowing problems, if any can be detected. An appointment with an ENT is also being scheduled to see if Norah's tonsils and adenoids are causing problems. We were able to make an appointment with a new neurologist. Norah's weight continues to be below the 3rd percent. Bless him for not using the statement failure to thive. She drinks two Pediasures a day to help gain weight and will continue to do that for now, with a weight check in four months. We are also contacting a new feeding clinic for additional help with eating behaviors and weight gain. Norah is also going to the eye doctor this week to check on her vision. I am sure there is more but for now that's what is on my mind after I spent lots of time on the phone making appointments and speaking with doctors this afternoon. All this while trying to set up some training at work so I can keep my job as a nurse and return to work in a couple weeks.

I feel like we were able to find a nice place this last year - Norah was healthy and thriving, making slow and steady progress. Then since late spring things have been building and I feel like now I'm sitting on an active volcano about to blow.

For now this is a verse that I turned to while I was pregnant with Norah and am using to remind myself to put that worry away.

Philippians 4:6-7: Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

Please keep Norah in your prayers as we head into lots of appointments in the next couple of weeks, as well as surgery to repair her hernias.

Batting Practice!

Not only is the sprinkler good for cooling off on hot summer days. It also works well as a tee for batting practice. Grant loves taking a swing!

Evening Concerts in the Park

I love summer and one thing that there is plenty of around here is concerts in the park. It fun to go as a family, listen to good music as we eat dinner.  Then the kids run around playing while Jason and I can relax and enjoy the music. This particular evening it was swing music that was lovely.

It's best if we can bring a picnic dinner, but sometimes that doesn't always work out and that's why it's nice that all of these concerts have food vendors. If they weren't there we wouldn't have made it this evening.

This week I think we'll tackle downtown and go to Jazz in the Park, I just have to Jason to agree now.

Is it Monday yet?

Well the last couple of months Norah has kept us on our toes. Jason and I have just felt more anxious and worried about her overall health.  We haven't had any episodes of vomiting, but we have seen changes in her activites and behavior.

Norah continues to be underweight. She currently is weighing in at 20 pounds. In May she weighed 18.5 pounds, and we started giving Norah Pediasure twice a day. Our goal was to have Norah gain weight, hopefully helping her grow and increase endurance. Norah tires out quickly if we do any activity that requires moving around, or using her walker. On therapy days, she is wore out for the rest of the day after a busy morning of working with her speech and physical therapist.

This last month Norah seems to have hit a plateau or even slightly regressing on progress made previously on chewing foods. She has begun to grimace occasionally when swallowing. She has also developed a crackling cough, it's not there all the time but when it does come it's usually after eating. She sometimes has a soft scratchy voice with this. We are wondering if she is beginning to aspirate.

While Norah has made good progress on her cruising and walking skills she cannot stand or walk independently. Occasionally she will tease us with a good 5 second stand or standing up with a couple steps to follow. She loves to walk, holding on to our hand and has since last spring. This last month her coordination with the ability to do this has worsened. Not significantly but enough for us to notice and her physical therapist.
Norah had an eye appointment next week. Since our appointment to the neurologist keeps getting cancelled we at least can find out if some of her usually behaviour is related to visual problems. She has mild strabismus, where her eye don't move together. We are also wondering if she is color blind.

Norah continues to "off" days where she just isn't her happy, smiling, talk your ear off self. They make me worry about this precious girl that is my daughter. My heart is heavy with worry, wondering if I'm missing something or am I stressing over nothing. I ponder many questions in my head; Could her Chiari be worsening? Could her tonsils and adenoids be to big causing difficulty swallowing? Is she just trying to be a normal 2 year old? Could her hernia just be bugging her and making walking more difficult? So many questions I wish I could turn my mind off sometimes.

Monday is Norah's 2 year check up with our pediatrician, the one who helps to reassure me with my concerns or is instrumental in getting us the help we need when things change. I had multiple appointments schedule for all of Norah doctor's this month. However many of her doctors have cancelled appointments scheduling them for September. I'm hoping that either our pediatrician will calm my fears and worries, or help to contact her doctors to open up an appointment for us. I have written a letter to the hospital sharing my frustration but am also wondering do we need to seek out care for Norah somewhere else. I pray for guidance on this road. Monday, will it come soon, can I plan enough activities for our family to distract me in the mean time? Will Monday come and leave me more questions and worry?

Mason is 2 months!

2 months. 8 weeks. I feel like I blinked and here we are 2 months later.

Mason, you have already grown so much, today I tucked away the first outfit you have outgrown. I sure there will be a few more in the next couple weeks. You are growing so fast because you eat and sleep amazingly well. I appreciate your patience as I tend to your siblings and appreciate that you let me know when I have taken advantage of your patience. I love the beautiful smiles that you give while you sleep. Your first month you were such a noisy sleeper, but now you have found peaceful slumber, I'm not sure which one makes mommy more anxious. Yesterday you gave me you first on purpose smiles. It came in a two parts. First the left side of your mouth would turn up to smile, then a few seconds later the right side would follow. You are tolerant to the gently yet aggressive touches from your brother and sister, as they come to say "I love Mr. Mason" and to soothe you by given kisses or pushing your paci into your mouth. You are not to found of that paci, unlike your brother and sister (who still doesn't want to give it up), but you'll occasionally put up with it while I try to quickly finish a task. You have learned quickly to tag a long with us on play dates, therapy and doctors appointment. You usually sleep through the event, but if you do wake, you are wide eyed taking in the new surroundings. You don't mind spending time on your belly as long as mommy or daddy are right next to you making it fun. I still marvel at how much you love your bath time since that first bath. Never tears, you just want to sit and soak as long as mommy will let you. I sneak in as many snuggles and cuddles as I can, and you don't seem to mind, Thank you. Don't ever forget that I am always available for a snuggle if you need one. Love, Mom

Fun with Amish Friendship Bread

While I was home over the 4th of July, one of my sisters sent me home with a starter bag of Amish friendship bread. I was happy to take it. It had been at least a year if not two since we last had a batch, and the bread is never a disappointment. If you've never had Amish Friendship Bread, here's the story. I wonder which keeps going longer, an batch of this bread or the energizer bunny? Well we made our first batch that was delicious, then I had the three batches to share. Well, with the new baby in the house and with Norah keeping us on our toes with lots of appointments right now, I ended up having two bags of starter left, that's enough for eight batches, I like this bread but that's 16 loaves of bread, let's not get crazy. I started to search for recipes that others have made with this mix and I was not disappointed with the variety of recipes I found. Here are two that we tried and tweaked that I had to share and with what was left I put in my freezer. I think that Jason will demand the struesel instead of just the bread from now on. Yup, it's that good.

 

 

Amish Friendship Brownies

In a bowl, combine and mix well:

• 1 cup oil
• 1/2 cup milk
• 3 eggs
• 1 tsp vanilla
• 1 cup Amish Batter

In a separate bowl combine the following dry ingredients and mix well:

• 2 cups flour
• 1- 1/2 cups sugar
• 1-1/2 tsp baking powder
• 1/2 tsp baking soda
• 1 box instant chocolate pudding
• 3 ½ Tbsp of cocoa
• 1/2 tsp salt
• 1 cup pecans or walnuts (optional)

Add dry ingredients to wet ingredients. Mix and pour into well greased and sugared 12.5 x17.5 jelly roll pan. Bake at 325 degrees for 30 minutes or until toothpick comes out clean. Start to check after 25 minutes. Once cool frost with chocolate buttercream frosting.

 

Amish Friendship Streusel

This recipe is just following the basic recipe, it just making the streusal part and baking it that's different.

BASIC RECIPE:
To the balance (a little over one cup) of the batter, add the following ingredients and mix well.

• 1 cup oil
• 1/2 cup milk
• 3 eggs
• 1 tsp vanilla

In a separate bowl combine the following dry ingredients and mix well:

• 2 cups flour
• 1 cup sugar
• 1-1/2 tsp baking powder
• 2 tsp cinnamon
• 1/2 tsp baking soda
• 1 - (5.1 oz) box instant vanilla pudding
• 1/2 tsp salt
• 1 cup walnut or pecans (optional)

Streusal Topping

• 1 stick butter at room temp
• 1 C packed brown sugar
• 1 C flour
• cinnamon - as much or little as you like

Mix/cut the ingredients together.

 

Pour ½ of the batter into a greased and sugared 9 x13 glass baking dish. Top with ½ of streusel, then add remaining batter and finish with remaining streusel. Bake as at 325 degrees for 45 minutes or until toothpick comes out clean, start to check after 35 minutes.


Next time, I think we are going to try lemon poppy seed bread, I hope it's as good as these.