Doughnut Day

We started Doughnut Day this summer to help Travis on the days he had to go to someone's house while Justin and I went to therapy. My theory was having something special in the morning would make the transition easier when I had to leave him. Plus, he would sometimes ask to take doughnuts as a treat for whomever would be keeping him. It has been a BIG hit and we have continued Doughnut Day even after therapy changed days and the schedule shifted.

We go to a little Mom and Pop doughnut shop run by a family from Cambodia. The woman who is always at the counter is so good to Travis. He started out getting one chocolate doughnut with sprinkles, and I would get 2 old fashioned, until one day I was in the mood for a long john (you know, an eclair with custard filling). Travis was intrigued and asked to taste it. He was hooked, and he came up with the great idea to switch plates that day. So I had a chocolate doughnut with sprinkles, and he ate my long john. The things we do for love...

Now he gets 2 doughnuts every week: a long john, and something else. He sits on the counter and searches for just the right doughnut. It is never the same from week to week. He has ordered powdered sugar, chocolate, coconut, pink glazed, and he has even tried cinnamon rolls and twists, which are about as big as his head! He is covered with glaze and chocolate from ear to ear by the time he declares he is finished. He takes his basket up to the counter, and she bags his doughnuts to go, along with a few doughnut holes! Today Travis wanted to take a picture he had made and give it to her, and I think she just about cried! I can see her face light up when she sees Travis come in and she loves trying to figure out which other doughnut he will pick that day. One day we went a bit later than usual and they were out of long johns. Travis was very upset! We promptly picked up a card and put their number in my phone so we can call ahead when we are running a little late.

We feel like we are part of the family at the shop. We are almost "regulars" and we recognize people and can greet them like old friends. And the woman behind the counter, she is amazing! She greets everyone who walks in with a cheery, "Hi! How are you?" She remembers what everyone likes and she asks, "No kolache today?" when they don't go with the usual.

She was pregnant last summer and asked Randy for all kinds of information about pediatricians, since she knew that we had just had Justin. She ended up having twin boys born at around 28 weeks. One only lived for about 3 days and the other boy remained in the hospital for several months. In talking with her we learned that we have the same ECI therapist and we have shared stories about "our boys". Her son is now one, and while he is not walking, he is cruising while holding on the furniture and it will not be long. Today for the first time she showed me pictures and told me how hard it is having one surviving son. She said they looked so much alike. I feel so privileged to share that part of her life.

Travis doesn't know all his days of the week yet, but he knows Tuesday is Doughnut Day. It has been great for our family, and Justin is learning to love doughnuts too!

Vision

Today I had a vision of how my life will be after afternoon naps end, and it was not pretty.

I should have known it was not going to be the day I had planned when Justin was crawling around at therapy this morning (Speech therapy, mind you) and he face planted into the floor and put his teeth through his lower lip. He bled everywhere (lips usually do). We managed to find ice and calm him down, and we were able to continue for a little while. Oh, and did I mention I was wearing a white shirt?

Then I swung by to get Travis from where he was staying during therapy, and we rushed to the grocery store to fit shopping in before swimming lessons. (I usually try to cram too much into every single day...) We were cruising and we made it out with almost everything on our list and with a little luck from the stop lights, we should have just been able to make it on time. If we would have had swimming lessons today...

Oh yeah, I haven't been taking Travis to lessons because the only time we could fit it in was during therapy, so a friend has taken him for the past 3 months. This was the first session that I would be able to go and watch him swim. I verified that there would be class this week of Thanksgiving, and I was there and ready, but they decided that too many people would be gone and they would make up the time later...

Ooops. That's what I get for not taking my own son to class...

Moving on: I had some other errands to run (library, car registration, church) and Justin fell asleep in the car on the way home. He has been considering dropping his morning nap, but he cannot make it until lunch time without it. So when he didn't wake up when we pulled into the garage, I knew lunch wasn't an option. Sleep always trumps food for Justin. He slept for 2 hours, and Travis was bouncing off the walls. I had to get 40 letters in the mail for a church event and Travis did not like that I couldn't play "worker" with him. So we played worker until he was ready for lunch. And then I got a call from a friend who just had a baby this morning and was sharing some of the details. I missed the doorbell. Twice. Travis had to come and pull my arm to get me to the door.

Then Justin woke up. So it was 1 pm and Travis was still eating and Justin didn't think he was ready for lunch. More phone calls and doorbells and it was 1:45 before Travis went to bed for his nap. I started to fold the 4 loads of laundry that were clean, but still in the baskets. I could hear Travis singing and talking upstairs so I turned on the monitor. The songs he was making up and the stories he was telling were too funny for me not to share. So I called Randy at work and had him listen and we laughed together. That lasted for 1 1/2 HOURS, and I finally got him out of bed.

I still hadn't gotten the letters in the mail, which I really wanted to do today. I checked to make sure the mail hadn't come and I rushed inside to finish the last few. Oh yeah, they came and left during that time which meant I now had a trip to the post office in my future! Not too bad, considering I really wanted to go visit new Baby Robert. We had one more knock on the door, our neighbors selling homemade cookies. Oh, yeah, I am having one of those!

We ran out to see Robert, and came home to Justin totally exhausted and unwilling to do anything! I hadn't been able to start dinner during naps, because oh yeah, they didn't both nap at the same time!!! So I sent Justin to bed (at 5:30), and hauled the rocking horse into the kitchen for Travis while I cooked. Dinner was lovely and Travis ate it ALL. (I love it when that happens.) And I had to wake Justin before he called it a night. He wasn't liking being awakened and nothing was making him happy, so we took a bath. Before the bath, Justin finally got out the poopy diaper he had been working on all day (probably the cause of his frustration), but then in the tub he decided he had a little bit more. After hauling the kids out, draining, washing, refilling, and finally washing the kids, Justin was ready for dinner.

Travis wanted to feed him. My crazy toddler, who hadn't taken a nap, wanted to feed my freshly washed baby. "Sure, why not?" The day was almost over. I knew we were on the downhill slope. I could make it just a little longer! Travis did so well, and Justin was mesmerized! He thought it was so cool! He ate all his dinner too! (We had ranch chicken, mashed potatoes, and broccoli, if you were wondering.)

We were so close! One more book for each and they were both in bed. I wasn't sure Justin would be ready after being up only an hour, but he let out a big sigh as I lifted him over the rails of his crib, and he was down for the night. Travis kicked and screamed, but so far he has stayed in his room. I didn't even have to threaten him.

Wow. I need a little hubby snuggle and the laundry fairy to finish up around here. Anyone know her number?

Letter

I was thinking earlier this week that I hadn't heard from the DS Clinic. It took me several minutes for me to realize that that was probably a GOOD thing. And my thoughts were confirmed this week when we got...

A LETTER!!

The very good thing! NO celiac disease! One more thing we can cross off our list!

Catching Up

When my sister was in this week she brought me some pictures of our trip to Seattle in October and of her wedding. So here's some catching up:

Oh, yeah, it's all about the tractor!


Practicing lifting the bucket.

All loaded up and ready to go!

I love this picture at the pumpkin patch... it looks like Travis has antlers!

In the pumpkin patch, trying to lift the biggest one he can find!

All ready for the boat ride!

This was on the boat ride. It looks like Justin's head is going to pop off! It really wasn't that bad, I promise!

Tidbits

Just a few things:

• We have been having some problems getting the new patio door finished and stained. Some of the trim pieces are not the right kind of wood, and fortunately the stainer noticed it before he started staining. It would not look right with different kinds of wood being stained. So they are ordering some new trim pieces (to go with the new screens...) and we're hoping it will be our Christmas present!


• Justin is doing fabulous in OT. We have been doing some sensory therapy to help him get over his issues with picking up food. I can tell you with confidence that it is NOT the texture that bothers him. He smeared yogurt all over the tray and himself today at therapy. And he picked out the little bits of veggie sticks from the yogurt mess and happily crunched them.


• Justin is also doing well at picking things up with the right side of his hand (the thumb side). He is using both hands, but he seems to prefer his left these days.


• Travis is Mr. Imagination these days. He is playing "worker", a favorite game, and he invented marshmallow caulking that he applies to the new windows with a ribbon attached to his rocking horse, and there is a button on the horse that makes it start and stop. SO funny!


• Travis also enjoyed having Uncle Jerry and Ami here for a visit for the Buddy Walk. He enjoys Uncle Jerry throwing him high in the air- and I mean HIGH. Our living room has a vaulted ceiling and he uses it! They have worked on "flying with style" and Travis puts one hand behind his head and points with the other one. Or the puts his head up and arms out, like an airplane. It makes me cry I laugh so hard!


• I did some "bulk cooking" with a friend after the last Meat Day. We went crazy and cooked about 40 pounds of meat: 5 pounds of BBQ pork, 2 crock pots of spaghetti sauce, 2 pots of taco soup, 4 batches of chuckwagon wraps (ground beef, BBQ-flavored beans, corn, a few other things), 4 meatloaves, and seasoned 16 chicken breasts. Plus we made 24 pumpkin muffins. Such a fun experience! Except for clean up....

Buddy Walk 2009

We had a wonderful Buddy Walk! The weather was perfect- warm and sunny- and the group was so enthusiastic and energetic. We had 50 team members walk with us! We arrived early and blew up Justin's balloons and collected the rest of our team's t-shirts. The plaza quickly filled with people. Our shirts were blue, Justin's shirt (and others with DS) was red, and the volunteers wore yellow. The volunteers lined the path, cheering us on and waving signs. The path was a little different this year, but we still walked along the bayou and enjoyed a little of the beauty of downtown Houston. The DSAH met their goal for fundraising too, which was great! Some friends who I didn't know were going to come were my photographers, and they took over 100 pictures during the Walk! Here are some of my favorites, but I reserve the right to share more later.

There were some police officers at the end of the route giving out medals to all the kids. They were very nice medals. They have the Buddy Walk logo on the front and on the back they say "Things keep looking up! DSAH-2009". I heard today at church that one of the girls wore her medal the whole rest of the day!

I cannot express the blessing of friendship. Seeing the huge group that we had and knowing that each person loves Justin and our family humbles me. We walked across the back of the stage in the plaza where the whole 3,000+ people were gathered before the Walk and I was awed by the sea of blue peppered with red. It was one day that we could unite in our experiences with DS. No two are the same, but we could all say that we shared something unexpected that had become a unique blessing. It was a day to celebrate the differences and revel in our common bond. It wasn't a "walk" we would have chosen, but a walk we now embrace for our children, our friends, our family, our future. Each one of those red shirts is a special person, valuable and well-loved. It was a good day.

The Results are In

Last week when we were at the DS Clinic, the doctor (Dr. Kathleen) said that she wanted to repeat some of the blood work that had been done at his one-year appointment, so we went on Friday to have the blood drawn. Justin is getting so smart and he knows when we lay him down on white paper, it is not going to be good. It means shots or worse, a blood draw. He did very well, and we are learning who the good phlebotomists are. We were told we would hear when the results came back: a phone call for bad news, and a letter for good. (That's my simplified interpretation.)

Yesterday, I got a phone call.

It was the thyroid, just what Dr. Kathleen had expected. His TSH (thyroid-stimulating hormone) is elevated which means he has compensated hypothyroidism. What I have read says that the pituitary gland makes TSH and sends it to the thyroid gland to cause it to make T3 and T4 which are thyroid hormones. The thyroid hormones are responsible for growth, puberty, reaction to stress, temperature regulation, and urine output. Because his TSH level is high, it means his thyroid is having to work harder to maintain the levels his body needs. It might NOT be able to produce enough for his body, which causes the body's metabolism to slow, resulting in fatigue, a lowered heart rate and blood pressure, slowing of the intestines leading to constipation, and a constant feeling of being cold. These are all things that Justin has has trouble with, so I am really hoping this solves some of his problems.

SO...

Another doctor. We have to get an appointment with an endocrinologist. And from what I went through yesterday, it's not easy. Some of these doctors have some major obstacles constructed to make certain that they only have to see patients who really need their services. I spent 20 minutes being transferred to several different people, none of whom could tell me exactly what I needed to do to get an appointment. I think I am on the right track though. They need to see all of Justin's medical records and screen them before they will call me to set up and appointment. I am not sure how long this process takes.

And the results of the celiac test are not in yet. That will be another week or so. So there may be more coming. Keep praying please!

(Information for this post was taken from an article "Late Effects to the Thyroid Gland")