The Big Scare

A couple of months ago I blogged about Doodlebug lagging behind in hitting his developmental milestones. Since then we have been making the rounds of the specialists to try and find out what is going on.

A month ago we saw the opthamologist. Apparently looking at the optic nerve can sometimes give indications of causes of developmental delays. When the doc examined Doodlebug I was told that his optic nerve looked good and his vision was fine too.

We also started working with Child Developmental Services (CDS) to have his speech, language, cognitive functioning, fine motor and gross motor development assessed. He was evaluated when he was 14 months old but was generally functioning at the level of a 9-12 month old child at that point. As a part of the assessment I received a written report. It contains their findings as well as notes on the findings of relevant medical professionals. One of the medical professionals that was referenced was our opthamologist.

So, I was in the kitchen reading my way through the assessment and making Doodlebug's breakfast. Perfectly ordinary Tuesday morning. And without warning it changed into one of the moments in my life I will never forget. When I got to the part from the opthamologist's and read "Dr. Blinkity-Bloop suspects anoxic brain damage."

The world pretty much fell out from under me. No one has ever suggested to us that Doodlebug's problems could be from brain damage. No one has even mentioned those words to us. In fact, most people are thinking he's just a late bloomer. Maybe need a little help to get caught back up.

After I managed to get myself back together and feed my boy, I called the opthamologist's office. I explained that I had received this report and wanted to verify the doctor did believe that he had brain damage and find out why no one had mentioned this to me. That was at 9:00 AM.

While I sat at home listening for the phone to ring I cried. Hugged my baby. Wondered what this meant for his life. Can he still go to college? Have a family? Will he struggle through school? Be teased? How will this affect our family? And then the mommy guilt set in. Is this my fault? When I was in labor and pushing his heart rate kept dropping into the 40's. Should I have done something different? I didn't want a c-section and the doctors thought I was refusing the surgery when I said that. Were my baby's brain cells dying while that was going on? Could I have prevented this?

The doctor's office didn't call back that day. I had a lot of time to think about it.

The next morning at 9:15 a nurse called me back. First she told me she didn't call me yesterday because the doctor had Doodlebug's file and just gave it back to her. Then she told me they didn't know what report I got the information from and that she couldn't give me any information anyway because the doctor's notes had not been transcribed.

As patiently as I could, I explained about the evaluation. I told her I had signed a release for the doctor to send the information to CDS because they wanted to verify his vision was okay. I had gotten the summary from CDS and it stated the opthamologist suspected anoxic brain damage and I wanted to know if that was correct.

Again she repeated that she couldn't tell me anything since the notes weren't transcribed yet but they would be done soon and sent to Doodlebug's neurologist. The notes were not done yet (a month after the appointment) because first the doctor was on vacation and then the transcriptionist. How nice for them, but you see, I really don't care. I am a little more concerned with the words brain damage right now.

When I asked how I could get a copy of these notes she seemed very surprised but said she could mail them to me. They should be in the mail by the end of next week.

And then she tried to get off the phone. Umm, no. We're not done yet.

I asked how CDS got that information if the notes were not done yet. She had no answer for me.

I thought, perhaps she doesn't understand why I am so upset about this. Maybe she thinks someone has already mentioned that he might have brain damage. So I explained that Doodlebug is developmentally delayed. We are trying to figure out why, but this is the first time we have heard the words brain damaged and we are freaking out. Could she please do anything to expedite these notes or get me any additional information under the circumstances?

She told me that "those words are in the report" (anoxic brain damage) and the the notes would be done by Monday and mailed to me. I don't know how that's expediting anything since Monday was her original day. I decided just to get off the phone with her (since I believe her name was The Unhelpful Nurse Who Blames Everyone Else).

I called my husband and asked him to call the doctor's office. If they get enough calls maybe they'll get our report done sooner just to make us stop calling.

He got a nice nurse on the phone who apologized to him (imagine that!) and told him that those words were part of a billing code, not a diagnosis.

Now I'm even more confused. Technically the first nurse didn't say that anoxic brain damage was an actual diagnosis or suspicion, but she sure didn't mention this. And if she knew that and didn't mention it I think I will change her name to Cold-hearted Mean Nurse. (Okay, okay, maybe the name I called her was a bit more colorful, but I was having a really bad day.)

This post is getting really long. Anybody need an intermission? Seriously, feel free. I'll still be here when you get back.... Ready? Okay, here we go.

I called our case manager's supervisor at CDS and explained the situation. (I wasn't going over our case manager's head, she is off getting married and not in the office right now.) She looked at the notes from the doctor's office and confirmed she had them and that matched what was on the report. She suggested I try to contact our pediatrician or our neurologist to get some more information. Maybe a doctor can get the process moving along.

Now I love our pediatrician. Love him! He is great with Doodlebug, tells me like it is and answers my mile long list of questions when we go in without making impatient noises or faces. I love him. So I called and left a message for his nurse to call me back.

Within two and a half hours he was on the phone with me. He told me that he had no idea how an opthamologist could make that diagnosis. Anoxic means that no oxygen got to the brain which resulted in cell death and brain damage. And since there is no known event where Doodlebug got no oxygen for a period of time no one could make this diagnosis on him in his opinion. Then he told me he called a neonatologist and reviewed Doodlebug's birth history with him. (See, I told you. This is why I love this man!) The neonatologist said that a heart rate dropping into the 40's a couple of times could not have caused this. If it had gone on for several hours or days, maybe. But not 2-3 pushes over 20 minutes. And Doodlebug came out breathing just fine with Apgar's of 8 and 9. He said that when the opthamologist's report comes in next week we will review it together and until then I should try not to worry about it, because there's really nothing he can see to worry about.

Whew! I feel so much better. Dr. E shoots straight with me and if I needed to worry he would tell me flat out.

And then the opthamologist office got it together and got the notes transcribed. They called my husband and read him the report. Here's the gist.

Optic nerve is fine.
Vision is within normal limits.
Follow up at age 3.

So where did the anoxic brain damage come in? A billing code. Yep, all that over a freaking billing code. Apparently that is how they will code it for insurance (as a visit to rule out anoxic brain damage).

I am so relieved I don't know what to do with myself. Doodlebug's still delayed, we have lots of work ahead of us We still don't know why he's behind, but at least no one is saying the scary phrase anoxic brain damage any more.

My One Dollar Garage Sale Bargain

I love garage sales. There is an amazing variety of stuff, some great deals to be had and some very funny stories. This is one of those stories.... I stopped at a garage sale because I caught a glimpse of a large stuffed Elmo. Doodlebug is a huge fan of Elmo and so I always stop to look at the Elmo stuff for him. I walked up and picked up Elmo to look at the price. Suddenly I hear a little voice.

"Are you lookin' at my Elmo?" I looked up to see a four-year-old little girl, obviously the current owner of Elmo. I laughed a little and told her I was. I moved on to look at some DVD's and noticed there was one about potty training featuring Elmo. As I pick up the DVD I hear her again, "Do you know how to potty train someone?"

Okay, this is just too good to pass up. I love these types of conversations with kids. So I tell her "No, but I'm hoping that if I buy this video I'll learn how. What do you think?"

Crossed her little arms, narrowed her little eyes and skeptically said, "I don't know...."

So I asked her, "Are you potty trained?" Indignenetly she replied "Yes!"

"Do you know how to potty train someone?" She nodded enthusiastically. With really big eyes I asked her "Do you think you could potty train my little boy for me?" Nodding her head she told me "Oh, yes!"

"How much do you charge?" I asked her. After a few seconds she cocks her little head and says, "Ummmmm, a hundred?" Ever the bargain shopper I clarify "Pennies?" That got a quick response of "No! Dollars!"

I told her I could not afford $100 and asked if she could come down on the price a little for me. She said, "Okay, how about one dollar?" "You're hired!" I told her.

And that, my friends, is how you hire a potty trainer for the grand sum of one dollar at a garage sale.

You Know You are Tired When...

In honor of my son choosing to get up at 5:00 AM (two hours early!!!) when he knows Mommy has mono and is exhausted at best anyway....

1. You have to tell the nurses in the hospital that you are not sure if you actually went to the bathroom or just dreamed it.

2. You cannot remember the word shower so instead you refer to it as "the box you stand in and the water comes down on your head and you get clean."

3. While pumping you realize that your left knee is starting to feel wet and discover you did not attach any bottles to the breast pump.

4. When your in-laws are lamenting a news story in which a mother has killed her 2 month old baby you actually understand how she could snap like that, and then forget to keep that thought to yourself.

5. You yell at the trash can when the lid refuses to latch and it is full of stinky diapers. And then you try to put it in time out.

6. Someone asks you your name and you really have to stop and think about it for a moment. Or maybe two.

7. Someone asks you your phone number and the only answer you can come up with is "I have no idea."

8. When you have a crying fit at 2:00 AM because you are up and down nursing a cranky baby and your c-section incision hurts and no man that had an appendectomy would be doing all this and you just had a big old BABY!

9. You can't think of a coherent way to end this post so you add one more bullet point and then hit publish post so you can go eat dinner.

Not that I have done any of these mind you. Oh no, not me.

How to Start Eating Gluten Free-Part Three-Medications

Make sure you check for gluten in medications. I have been told numerous times (from health care professionals who should know better) that there is no gluten in medications. This is not true. Gluten containing products are sometimes used as a filler. You can check this site http://www.glutenfreedrugs.com for some name brand medicines but your pharmacist will need to call for most generics. They may have to leave a message and these calls are only answered M-F during business hours. You can ask your pharmacy to flag your account that they need to verify all meds are gluten free.

A word of caution on the medications, unless you know your pharmacist well, always ask if they have verified the medication is gluten free from the manufacturer. Even though my account is flagged at my pharmacy a substitute pharmacist did not bother to do this for me. When I asked he did call the manufacturer and left a message for them to call him back. They didn’t. I had to call my regular pharmacist the next day to have him do it. It took me over 24 hours to get antibiotics for strep throat. Not fun.

Parenting

Last week I was part of a message board discussion about teenagers having sex. One of the hot issues became how a 17 year old boy should take responsiblity for having unprotected sex or sex in which the birth control was obviously faulty (ie the condom broke). This was a pretty controversial issue and garnered a lot of discussion.

I was thinking about how we will prepare Doodlebug to take on these decisions at the age of 17. After all, the decisions involve more than just the morality of pre-marital sex. If our son chooses to have sex and that age and accidentally fathers a child he could be raising a child when he is 17. And then the thought hit me, most boys are already dealing with issues of sex by 14. I remember standing in front of our refrigerator and realizing that some kids are having sex at the age of 12. Not only do we have to share our values with him before then, we have to make sure he knows his own. What does he think of pre-marital sex? If he chooses abstinance how will he make sure he can follow through on that decision? What will he do when he's tempted? Where does he draw the line? And if he chooses to have sex, what will he do about birth control? Where will he get it? What will he do if he accidentally fathers a child? How will he support this child?

Typing all of this out, makes me queasy. How in the world can a hormonal teenager be expected to be able to do all of this? How are we going to teach him how to do all of this in the next 11 years? It takes a lot of strength to abstain from sex until after marriage, where will he get that strength from?

The reality of life today is that we are still working on the word "no". Mostly, I say it and Doodlebug laughs. It's not working so well yet.

But I am also a very practical mom. When Doodlebug decides to climb the stairs (which occurs roughly every 2 1/2 minutes) I let him. I stand behind him and let him fall down the stairs. My job is to let him go while protecting him from serious injury. Bumps and bruises are okay, but a concussion is not. Seriously, I am working with someone who has almost no life experience. He does not know falling down the stairs hurts. If I catch him every time, he never will. And if I wait he will be better at climbing the stairs and fall from a higher height.

Wait, what does falling down the stairs have to do with having sex as a teenager?

It's about learning your actions have consequences. If you aren't careful on the stairs you will get hurt. Just because you can do something does not mean that you should. Mommy won't always be there to catch you.

It hate watching him fall, but I am determined to teach him these life lessons. It will hurt less to learn them now. The stakes are only going to go up as he gets older.

So Doodlebug's dad and I are trying to figure out how we want to parent our child. How do you consequence a one-year-old who is deliberately throwing food on the floor (and the walls, and the table, and the cat...)? How do we help him to understand that when we say no, the appropriate response is not hysterical giggling? How far do we let him fall before we step in to soften the blow for him? I honestly don't know.

This is what we know in our parenting strategies.

1. We set him up for success. That means we don't take a hungry, exhausted child to the grocery store and expect perfect behavior. We work within his limits and keep our expectations of him achievable. Well, that's the goal anyways.

2. We believe in having him deal with the consequences of his actions. Throwing your paci means you don't get it back. Well, not for all of eternity. After all, he is only a year old. We are still working it out.

3. This parenting stuff is much, much harder than it looks.

How to Start Eating Gluten Free-Part Two-Baking

Let me just say that baking gluten free is much, much different than baking with gluten. The biggest shocker for me was the vast difference in the consistency of the dough for bread and pizza crust. With gluten you can roll the dough up into a ball. Gluten free dough is more like a thick brownie batter. My first rounds of gluten free baking involved many skeptical looks, deep breaths and cooking the stuff anyway. Usually it came out fine. Gluten free baking is also a lot more finicky than what you are probably used to. It’s really tempting to make substitutions in recipes and make things your own way, but I would recommend that you find a recipe that looks good and follow it. Once it comes out the way you want it to, then start to tweak it. By tweaking one thing at a time you will most likely avoid the scenario below. I pulled this from the comments section of a recipe I found posted on line.

After 60 minutes, the centre of the cake in a Bundt pan is mushy and I don't think it will improve. Nope: an hour later - bound for the garbage can Time and money spent, all for nothing. I made a couple of substitutes - 2C almond flour + 1C Red Mill 'all-purpose' gluten free flour vs. the suggested flour mixture; 2 Tsp vanilla, 2 Tsp almond flavoring, neither of which was gluten free; added 3/4 Tsp guar gum and 1/2 Tsp baking soda and 2 Tsp baking powder.

Here are the most likely culprits in her cake disaster. The substitution of flours. There are a lot of gluten free flours out there but many are not able to be swapped out cup for cup. If one of the flours is denser or holds more moisture it can drastically change the finished product. If you need to substitute flours do an internet search and see what flours will substitute well for the one you want to eliminate. Usually all purpose gluten free flours can be exchanged out cup for cup, with very little difference.

I’m not really sure why she added the guar gum, baking soda and extra baking powder. I am guessing that the guar gum was used as a substitution for the Xanthan gum in the all purpose flour recipe. Guar gum and xanthan gum are often used in gluten free baking. Gluten is what holds together traditional baked good and when it is removed from a recipe Guar or Xanthan gum are used to help bind the finished product. In this case, I would expect that it is already a part of the all purpose gluten free flour mix.

One other critical mistake was using vanilla and almond flavoring that were not gluten free. Even if the cake had turned out fine, the small amounts of gluten in the flavorings would have contaminated the rest of the cake.

The recipe being discussed above is the one I base my pound cake on.


And yes, I did make a couple of substitutions. I know, I know, I just told you not to do it. A classic case of do as I say, not as I do. I was fortunate and the recipe came out okay. Had it not come out okay I would not know what was to blame. Was it just a bad day? Did the flours change things? Was it the substitution of corn starch for an egg? Then I have to decide if I want to try that recipe again and see if I can figure out the problem, or just move on.

One final note about baking gluten free, it's really easy to get caught up in buying tons of different flours and baking mixes and that gets expensive quickly. I have tapioca flour, potato starch flour, corn starch, corn flour, white rice flour and brown rice flour. Those are some of the most affordable flours and I have founds I can make almost anything I need to with them. When I want to try a new gluten free recipe I hunt for one that uses only the flours I have in my cupboard. If I can't find a recipe using those, then I will buy a new type of flour. It helps.

Gluten Free French Toast

Ingredients

4-6 slices of gluten free bread
1 butter
1 T sugar
1 cup milk
4 eggs
1 t cinnamon
1/2 t vanilla
1 husband who is willing to make the gluten free french toast for you. (Although this is not essential, I sure like having him around.)

Directions

Whisk all ingredients except butter and bread in a shallow dish.

Place the bread in the egg mixture and let it soak about a minute.

Heat pan or griddle over medium or medium high heat.

Melt butter in the pan.

Add soaked bread to the pan and cook for 3-4 minutes on or until golden brown.

Flip the bread and continue to cook until golden brown on the other side.



We typically serve this with powdered sugar sprinkled on top and maple syrup. When we have it for dinner it is usually accompanied by ham, although we like bacon with it too.