Taking a break

I am having to take a break from my blog. My family needs more of me right now and this is something that I like to do, but can easily step away from for a while.

Update

I hope to be back to posting more regularly. We have been having a pretty busy couple of months. We did close on our new house in June and then I promptly left to spend a month at my parents' place with the kids. Once home, we had a protracted battle with our school and Talli ended up missing most of the first 6 weeks of school (so I was her teacher). O ended up having some surgery.

We have had weeks with 4-6 medical appointments. I try very hard not to have more than one in a week, but we lost 3 medical providers over the summer because of the physicians leaving their practices. It took several meet and greets and appointments until we could find the right fit for us. We are still looking for a pediatric GI specialist, but that is not something incredibly urgent for us.

In all of this our beloved babysitter moved away. We are on the search for other helpers.

"Don't share food", said with a stern expression, while you are giddy inside

Those with Propionic Acidemia often have anorexia. They have no desire or limited desire to eat, so often depend on feeding tubes. I don't know of any affected individuals who have swallowing issues, they just don't eat.

I had a sweet kind of peace when we stopped feeding therapy when she was about 5 years old. She had eaten as an infant and then as a toddler she ate quite a bit. She got her g-tube at 6 months old, which relieved a lot of stress about her getting the food that she needs, especially when she is sick.

Talli does have a good relationship with food, thanks to all of that therapy. She eats when she wants. She is developing table manners. We rely on how much she eats as a guide to how well she is feeling. She gets in food jags, much like toddlers do and wants to eat the same thing all of the time. A few months ago she wanted to eat plained buttered noodles, every day. Now she has moved on to Wavy Lay's potato chips.

Because of food allergies and germs food sharing is not a good idea. But with things like potato chips that have 2 grams of protein per serving (she only gets 14 grams/day) we need to make sure that we know what she is eating. So as I give the kids a snack I tell them that there is no sharing and they repeat the rule back to me.

This afternoon, I just got a chuckle after M had settled down because Talli had swiped all of his chips and eaten them. What a normal sibling thing to do! Since the bag of chips was empty, Talli agreed to buy M a small bag of chips and she apologized. It is also very ironic because M, who is 2, but looks almost 5 asks every day, "Can I have Talli's______?", after she has finished with a meal.

Allergy friendly foods & Peanut Free Planet

While Talli does not eat much, having safe food around is always a concern. She is currently eating 100-200 calories a day, but since some she is sensitive enough to some allergens that being in the room with them or touching a contaminated surface and then biting her nail can cause a severe reaction we are always cautious.

Tree nuts are one of her most serve allergies, peanuts not so much, but peanut allergies tend to get worse with time. She is also on a very low protein diet, so that adds quite a bit of a complication. Cambrooke Foods is known in the metabolic community for good tasting low protein foods, however, and this is the big one for us, they make peanut and egg containing products, so we assume their whole product line is contaminated. Usually, when I call a low protein food vendor about allergies and cross contamination I hear in a quick raised voice, "Ma'am, we make foods for metabolic disorders not allergies." And my response is..., "My child has both." It has been far easier to get the protein counts on allergy friendly foods, some of which are very low protein than find safe low protein foods.

Here are a few companies that we enjoy:
Applied Nutrition- Low protein chocolate (only appealing to the low-protein crowd) that is allergy safe http://www.medicalfood.com/ They do have cute Easter shapes.
Ener-g- They do manufacturer with some nuts at some facilities, so a call to them is usually needed http://www.energ.com/ We all like their pretzels and Gourmet crackers.
CherryBrook Kitchen- Allergy friendly baking products- cake, cookie, pancake, and brownie mixes and ready made cookies. http://www.cherrybrookkitchen.com/ Save the box bottoms as you can redeem them for mixes, t-shirts, cupcake holders, and an ipod. Target carries some of these as does Jewel/Albertsons and Whole Foods.
Enjoy Life- cereal, cookies, granola bars, etc. Some items are too high in protein for us to use. http://www.enjoylifefoods.com/
Divvies- Cupcakes, popcorn, cookies and candy. http://www.divvies.com/ Amazon sometimes sells them as well. Our local peanut-free restaurant stocks them as does Disney World.

Ok, so the last one is Peanut Free Planet http://www.peanutfreeplanet.com/. We have ordered from them a few times. I am preparing for our annual Easter Egg Hunt that we host and was trying to come up with candies to put in the eggs. I also give out prizes as well. I was thrilled to find chocolate foil covered eggs to go into the plastic eggs as well as an inexpensive chocolate bunny to give out as a prize. So here is my order:
Amanda's Own Chocolate Baby Bunny $2.69/2oz (2, one for a prize and one for ODS's basket)
Comet MiniChick milk Chocolate Egg Bag $19.99/2.98lbs
Gimbal's Cherry Lovers 9 Cherry Favorites (for DH & DSs baskets)
Sunbutter $4.49/1lb Nearly the same taste as peanut butter and slightly better taste than Trader joe's brand

The chocolate is likely something Talli won't like the taste of because she is used to the low protein version, but at least it will be safe around her.

Happy Egg Hunting everyone!

Being part of a community

I wanted to start this post about the earthquake in Haiti. It is a terrible tragedy. I think it hits home for special needs families like ours. We already see how fragile life is and if our family was in this situation it would be even more dire.

Moneysavingmom on her blog is listing some groups helping out in Haiti. She is also making personal contributions to relief efforts. Our family has donated to Doctors without Borders and will be finishing up Newborn Humanitarian Kits to be donated through our Church's Humaniarian arm. I have posted links to the blog, Doctor's Without Borders, and information on the Newborn Kits. The Newborn Kits are always needed as blankets, diapers, and soap are constantly in need through out the world.

Prior to the earthquake, I had been thinking a lot about communities and how we work together. We have been hit lately with some pretty nasty winter weather- ice storms, sleet, and lots of snow. When it is like that you see our community coming out. I particularly notice it about 2PM, the stay at home mom's are out shoveling and deicing before the Junior High down the block lets out. We have single women living on either side of our house. One with a young son frequently has her walk and drive blown by another family. This has been done for us as well; I remember one particular storm when Talli was very ill and I needed to get her to the hospital. I had my drive quickly blown, so we could leave.

And there are always angels

There is another little angel in heaven.

For the past week, I have been talking and texting with another mom whose daughter has Propionic Acidemia (PA). There was also a lot of talk with a mutual friend as one of us might have a new piece of news on the little girl. At times, she would be doing better, then take a turn for the worse. Yesterday things did look better, but this morning they decided that no more could be done for her and took her off life support.

There is always sadness, survivor guilt for those of us who still have their children, and some happiness and peace for the child who does not have to deal with tubes or pokes any longer. Most of us know these things are coming as the life expectancy of PA is still only 3 years. This angel was 3.

Talli looks at me curiously when I tell her I am sad that someone died. It could be my grandmother or another child with PA. She tells me how they are with Jesus and are so happy.

May our newest Angel's mother have peace and the rest of us love our angels while we have them.

There are always adjustments....

I got a call from my dad this morning. No one made it to the phone before it stopped ringing as we don't usually get any calls on a Sunday morning. So I called him right back. My maternal grandma died this morning.

She was 84 years old. For the past 7 years she lived in OR with my parents or at a "memory care" facility. She had Alzheimer's for at least 10 years. She was also a survivor of breast and uterine cancer and MS. She could sew anything and her ability to sew was one of the last things that she lost. She had an incredible sense of humor. She loved her family deeply and would tease us that our weddings, graduations and births messed up her travel plans. She has 3 daughters, 19 grandkids, and a multitude of great-grandkids.

Prior to my grandfather passing in 2002, they traveled extensively. Pretty much wherever they could get free military flights or their camper could take them they would go.

Her father was an immigrant from Denmark and her mother from Germany. She met my grandfather at a dance in Salt Lake City and they were married soon afterwards. They honeymooned separately: he went hunting with his brothers and she got aquainted with her new in-laws. She never let him live that down.

When my paternal grandmother died in 1998 and my maternal grandfather in 2002 there wasn't a question that I would goto the funeral and see my family. Talli was just an infant in 2002 when we flew out to California. She was actually eating everything by mouth then, although I recollect her vomiting during the trip.

But now, she is pretty much housebound because of H1N1. We rarely travel without her getting sick or landing in the hospital and I can't imagine trying to make it across the country and her not getting sick. We have somewhat full coverage for home nursing during the day, however, I don't trust them fully (a nurse ate a peanut product in the house last week, among other things), so I can't leave her.

I know the funeral will be in Marin County, CA which is where my mom grew up, but I don't have a time yet. I am not hopeful that I could hop a direct flight out and back to make it, that is only an option if it is on a weekend.

My mom understands, but it would be nice to go.

Special Needs Mama

I am a private person for the most part, but am willing to share if someone asks about me or my experiences.

After spending a weeking in a hospital PICU with my 7 year old and two frustrating days at home arranging for her care I thought that I should at least share some of my experience to help others. I have liked to think that I could be a regular stay at home mom and handle the care of all of my children myself. It has come to a point where that is not the case and I need someone here in my home to help me. This has been a more difficult change than having her feeding tube placed because I have to fight for it.

My seven year old has Propionic Acidemia (www.pafoundation.com), secondary immune deficiency (www.primaryimmune.org), Long QT Syndrome (www.sads.org), asthma, allergies, GERD, esophagitis, and hypothyroidism. She is primarily tube fed with her Zevex Entralite that we love! She is also a lover of almost everything: people, amusement park rides, Chuck E Cheese, everything electronic, her brothers, her classmates, her imperfect parents, fishing, playgrounds, etc. She seems to be able to balance in her mind the trauma of needle sticks and IVs with the video games she will play at the hospital and TV she can watch on the way to appointments.

We have two healthy boys. A 2 year old with some pending allergy tests, who had his tongue clipped at 4 weeks, and a 5 month old preemie who is delighted by his siblings as much as they delight in him.