Biscuits

Biscuits are easy:

Tell husband to go to the store and buy the pop can flaky homestyle kind.

Ha.

Seriously though, I don't actually make everything from scratch even though I can. Sometimes rolling out biscuits is just too much, too much time, too much mess, whatever. I grow and make enough of my own food that sometimes I get tired and take short cuts. I have stopped feeling ashamed of this, sometimes I also get coffee and pizza at the gas station (here in Iowa, that is actually some of the best pizza around!).

I do make biscuits though sometimes and they are good! Here is the recipe I use, from a book called "A Skillet Full- Lodge Cast Iron Recipes":

2 cups flour
2 t baking powder
1 t kosher salt
3 T lard and butter (2 T lard, 1 T butter or adjust how you like)
3/4 to 1 cup of WHOLE milk (don't cheat)

mix dry ingredients together
cut in fat either with a fork, a pastry cutter, or a food processor
when that mixture is "sandy" add milk until it is doughy, mix in with spoon
put on to a floured surface and roll out 3/4 inch thick

I use a cookie cutter or a mason jar to cut out shapes.

Bake at 450 degrees for about 15 minutes. Sometimes they take less time, sometimes more, just peek at them and when they are browning they are done.

My secret ingredient that is totally optional and not from the book? a 1/4 teaspoon of ground lemon peel. It really reacts to the baking powder and fluffs these puppies up.

Gravy, it is all about the gravy.

I decided to split up my post about biscuits and gravy into two posts because gravy has earned its very own place in my kitchen.

Gravy is easy.

No. Really it is.

Oh, I know those of you unbelievers are shaking your heads now and thinking about just grabbing a jar or packet of gravy from the grocer.

Don't.

Gravy is just a roux base. I know, the term roux is fancy sounding and scary.

So, to start, the gravy I make for chicken fried steak is the same sausage gravy I use for biscuits and gravy. The exact same.

1 lb ground sausage
1  Portabella mushroom
2 T butter
2 T flour
1 cup chicken broth/stock
1 cup milk
2 T sour cream
1 T seasoned salt w pinch of cayenne

Start with a good ground sausage. Pastured pigs make the best sausage. I have used green onion, breakfast, or Italian sausage- they all work. I like the breakfast blend the best though. Fry it up brown. When it is half done, add chopped mushrooms. Brown until cooked and crumbly. Add butter. Once the butter melts add the flour and sprinkle it all over everything. Stir fast. Be ready with the broth. Once all the flour is wet with the grease and butter, add the chicken broth and stir furiously. It will thicken quick, add the milk when it thickens, stir furiously and turn the heat to low/medium. Add the sour cream and seasoning to taste. Turn the heat off entirely once it is as thick as you like.

See? Easy.

When making a chicken gravy, start with melted butter, add flour and stir until all the flour is wet, add 2 cups of broth and stir until it is as thick as you like. Season.

When making Alfredo type sauce: melt butter, add flour and stir until flour is wet, add 2 cups of milk and stir until it is as thick as you like, add 1 cup of cheese of your choice, gently stir off heat until cheese is melted, season. I like Asiago and Parmesan (Not the green can kind though, the real hard grate yourself kind, because I am a cheese snob. The green can stuff technically will work.)

Beef, lamb, chicken drippings, ect- all follow the same equation. Melted fat, add flour, add liquid of  your choice, stir furiously until thick and gravy.

A brief interlude, grief and support and random thoughts

What I am writing as our 22q story is only our own experience.

The reality is that some 22q11 deletion children die. They catch something that their immune systems cannot handle. Their fragile hearts give out. A mistake is made at a hospital and a crucial medication is overlooked.

We are blessed that none of these things are reality for us right now. That is not part of our story. I don't know what it is like to sit next to a breathing machine. I don't know what it is like to hear a crash cart called for my baby. I simply don't know.

This last year a 22q child that was very much a part of our community died because of complications, hospital error, and lack of communication between specialists. The heartbreak has been felt like a tidal wave through our community. That family lives one of my worst fears.

It is not that I don't trust doctors, I just know that when things get as complicated as they can be, things can easily go wrong. I know that the most medically invasive options is not always the best. I will not get sucked into trusting someone just because of letters that follow their name, they have to earn that trust. They HAVE to work for that trust.

When Isaac was first diagnosed my first impulse was to call the three mums I knew that had special needs children. S., H., and L. were so amazingly supportive. H. and I had long phone calls and visits where I cried. S. gave me tips about doctors. L. invited me to the Down's Syndrome group.

Wait. What?

So many times in the 22q community families are referred to the Downs Syndrome support networks. So many times it becomes a hot button. My kid does not have THAT. The reality is that children with physical markers of their genetic promise are discriminated against, publicly singled out, and mocked. We don't want that for our children. We put distance between that and our family. The reality is also that folks with typical children are putting that same distance between our children and theirs for the exact same reason. 

Downs Syndrome and 22q11 deletion syndrome have LOADS in common. Hypotonia, heart issues, immune dysfunction, motor skill delay, speech issues, OT, PT, ST, IEP's, specialists, therapies, othering, discrimination, family tension, hearing issues....this list of things in common are more extensive than we realize. Chromosomal anomalies have issues in common globally. The reality is that it makes sense to connect our families and our children and support each other.

Once the initial shock wears off, consider it. I am grateful that I did so quickly because these families are still a HUGE part of our support network. It is good to have real life people that you can cry with and to, outside your own family.

Clinicals and Answers, Sort Of, Part 3

After our inhumane treatment at the JerkFace's office, I was at my wits end. I don't get to that place often. I am generally a joyful, hopeful mama. But this was ridiculous.

We went to do labs that he requested. I still wanted my answers. The lab technichian actually injured Isaac's arm! She never even got a good draw, yet she blew out one arm, he was in tears, bleeding, and bruising. We left without the draw for labs. Because, F them. I went directly to our pediatrician's office, showed them the injury and his phlebotamist assessed the injury. Isaac could not even bend his arm for two weeks. She took the draw from his other arm, it took three sessions spaced over 2 weeks. Why? Because the requested labs required that much blood and Isaac's weight indicated that they be spaced out. !!!! The big hospital lab never even mentioned that! Or asked about his weight! I was pissed and grateful at the same time.  Grateful for this tech. She called me later that night personally to check on Isaac and ask about his condition so she could research it on her own and make changes to how we do draws.

We always see her now. She always gets the draw. He barely even cries. Also, about 1/8th the cost of the big lab. Same labs.

In the two weeks that it took to get them all done, JerkFace's office called me three times to let me know how concerned they were that we left their lab and that we really needed to get them done.  I explained each time what had actually happened and that we were getting them done. Each call made me angrier and angrier, but I stayed sweet. Why? Because being a bitch gets you crappy customer service especially from health professionals and my kid's health was on the line.

The nurse called from JerkFaces office a 4th time. The labs said to vaccinate him ASAP. Huh, I said, what exactly did you test for? What were the results? Could you send them to me? She told me no.

She told me no.

She would not explain, only that the doctor's decision was that we needed to get Isaac up to date on all his vaccinations as soon as possible. I asked if we should do one at a time or skip the live ones. She said there was no need to do that. Just get them. I asked her to send me the labs. She then told me our pediatrician could request them.

That's not how we do things. We get copies of everything. We see too many specialists to wait on fax machined requests. We don't make medical decisions of any kind without the data and gosh darn it I paid for those labs, Isaac was injured in their lab, and they had better tell me what labs were done.

After my experience in Iowa City I wasn't going back there, gee, I can Google 22q and read off the main website too folks. JerkFace said we wouldn't be allowed to see anyone in HIS practice (lie, we still see the endocrinologist).  The two big 22q centers were thousands of miles away or may as well have been.

Then my online 22q mama friend K. suggested the 22q clinic in Minnesota.

What a blessing. They scheduled us in 3 weeks. They only do clinics once a month. After fretting about the drive and the time involved and who would watch the kids, my father in law offered to drive us up, pay for a hotel, and take the kids swimming all day while Isaac and I were at the clinic. Huge blessing. Huge relief.

We checked in at 7am into a suite and spent the day there. In one room. We saw, speech, nutrition, immunology, child development, ENT, cardiology,  audiology, we had labs done, we had hearing tests, a cardio echo was finally done (still fine), our case manager nurse checked in with each new specialist and made sure we got lunch. At the end of the day (3pm) we ALL met in a conference room and discussed what each found. I also found out that Dr. JerkFace isn't even an immunologist. He does something else specialized and with pediatrics but not immunology and he was wrong about shedding and wrong about what the right way to go about vaccinations is and he ordered a bunch of tests that really didn't tell us much about Isaac's actual immune function. The real immunologist at MN, ordered those tests and had the results before we left.

Conclusion, Isaac is 60% deaf, maybe 100% and needs an BAER test to confirm in what way. Will need aids or surgery.
Heart is fine.
Palate is fine. All systems present.
Kidneys are both there and functioning.
All glands present.
Hypotonia is the dx reason for motor delay. Makes sense.
Low iron a priority. Referred to nutritionist.
Low D an issue, but willing to treat with nutritional plan. 
Titers run for vax he has had, show fantastic immune response. Learned they could titer. Will use that.
Vaccinations should still be done with caution and wait on the live ones until he is physically stronger. 22q kids have different immune systems and sometimes they look like they work then don't.
Everything else fine.

I was praised for breastfeeding. They made sure everyone knew I was a breastfeeding advocate, would not back down, and that I intended to breastfeed into toddlerhood and practice baby led weaning. I was praised for baby wearing, by the physical therapist, and they all said Isaac looked healthy and was sweet. 

The day was fantastic.

Except it wasn't' supposed to be. I was supposed to be devastated that he was dx'd as deaf. I wasn't. Should I be? I asked again if he should be retested. If the dx was a mistake. His deafness was the same as Chad's. He has so very few symptoms. Could this test have been mishandled like prior tests done at that same lab while I was pregnant? They offered to retest....but if it came back negative, Isaac would still be deaf, but our insurance would not cover hearing aids or the surgery! Insurance would only cover it if it was a genetic "defect". How messed up is that.

To be continued.......