Our week(s)

I am finally getting caught up on blogging! This past week has been crazy between the doctor appointment, dealing with the news, trying to find a way to avoid the feeding tube, making new appointments, and then getting sick! I think all of the stress from the beginning of the week made me get sick so easily. Things have settled down and we are working hard to get as many calories into Ryker as possible- I have a notebook where I write down everything he is given, how much (if any) he ate, and then I calculate the calories and fat for every meal and add them up at the end of the day. We have an appointment with the pediatrician tomorrow morning for a referral to GI and OT/Feeding therapy. After the appointment we're heading to lab for blood work so we can get the growth hormone testing completed. They are also checking for celiac disease again, although I feel like it isn't necessary because he has been G-free for over a year now. Anyway- here are a few random pictures from the last week or so. Enjoy! :)

PECS

Earlier this month, Ryker's teacher made a home visit to show me how he is using PECS (picture exchange communication system) at school. Last year when we had in-home therapy, the speech therapist started us out with large digital photos to use around the house and he did well. In school, they use the PECS system to communicate and they also use it for their picture schedules. He is really getting the hang of it, so a couple months ago Mrs. K made us a PECS binder and we started using digital images of some of his favorite toys. He did so well with that, so we are able to move on to the symbols and smaller pictures. We use PECS for snack time only, as we're trying not to overwhelm him with a bunch of new things right now. After we feel he has mastered that, we will move on to other things. We are so, so excited about this- it has opened up a whole new world for him because he can start communicating with us!

Sweet Treats

Makaylin and I have been on a sweet treat rampage these days. It all started with making "Puppy Chow" or as some call it "Muddy Buddies". I had bought the ingredients to make this because my nephew, D, was going to be spending a few hours here and I thought it would be fun to do with all of the kiddos. Turns out there was a change of plans, so it was just KK and I. After this, I ended up making rice krispie treats, brownies, and cookies. What can I say- I have sweet tooth!
[oops... don't mind the watermarks. I must have forgot to uncheck that during my export.]

Dr. Visit & Mall of America

Today we took Ryker to Children's to meet with his Endocrinologist. Ryker did really well during his visit- calm and able to adapt to what was happening. There were no meltdowns except during his blood draw, but that is normal. They weren't able to get enough blood for all of his tests- they had to try each arm and each vein burst during the draw. I'll have to take him to the lab in New Ulm to get another draw at the end of this week.

The report from the doctor was not what we expected. Ryker has been losing weight- he is now 23 lbs. which is very underweight for his age. The doctor is talking about inserting a G-tube into his abdomen in order to get in calories/nutrition. Basically, it's a feeding tube. The doctor has been tracking his growth for almost a year and told us today that it has gotten very worriesome and serious. Another area of concern is his growth hormone. He had a test done in September and it was low/abnormal. We are repeating the test to see if there is a change, and if not, he will have to endure a 4 hour test called a "Growth hormone stimulant test". If that test shows their is a deficiency, we will have to give him daily injections of growth hormone. Between the possibility of a g-tube and daily injections... we are very, very overwhelmed.

We also need to get him to a GI specialist, and because of insurance reasons we have to jump through hoops to do it. Luckily, I was able to get Ryker an appt. with Dr. Mohror on Monday morning and we shouldn't have a problem getting the referral. The hard part is waiting for an appointment; all of his doctors schedule appts. months ahead of time, so it's usually a long wait before we get our first appointment.

The poor little man can't catch a break. I wish I could take it all away and make it better. The sensory issues that are interfering with his nutrition, his GI issues (I won't give details...), and possibly growth hormone deficiency does not give him good odds for gaining weight. Being malnourished doesn't help any of his autism symptoms, so we are just ready to get this all figured out. We will do whatever needs to be done, no matter how difficult.

On a brighter note...

After the appointment, we all headed to Mall of America. We had lunch and went to the Aquarium which both of the kids enjoyed! Makaylin was SO excited and very interested in everything- she was even able to hold and touch a starfish and sea urchin! If you have never been to the aquarium at the MOA, I highly suggest it!

[lunch at Johnny Rockets]

 [the aquarium]

Our Week

This week the kiddos have been...

Playing play-doh...

Being silly...

 Baking...

 Playing games...

 Hanging out in "Mater"...

 Daddy/Daughter swimming date! 

All in all, it was a great week! 

Imitation!

Ryker spent a good chunk of his morning sending cars down this long cardboard tube. I showed him once and then he did it on his own. He is making some awesome progress with imitation; in the last few weeks he has done so great! Last week I got out the Mr. Potato Head he received as a Christmas gift and he did something so unexpected- he put the glasses on the Mr. Potato Head. I know, it probably doesn't sound like a big deal to most people... but it was HUGE for us. He knew what to do without someone showing him! 

Our Year End Review

Wow! The new year really snuck up on us this year. 2011 was quite a year for our family- a lot of challenges, changes, adaptations, struggles, accomplishments, smiles, laughter, success, and hope.

January- most notably, Jan 5th changed our lives forever. Ryker received his medical diagnosis of Autism. An extremely challenging month for our family.

February- Makaylin attended ECFE for 9 weeks, Ryker started extra therapy for feeding, OT, and speech. 

March- Makaylin started turning into quite the little helper! 

April- the kids turned 2 and we celebrated with a dora and diego jungle party! Adam and I celebrated our 4th wedding anniversary. We also hosted Easter.

May- Ryker really started show some notable progress during this month! Adam's buddy, Dan, drove from Ohio for a visit with us. We also had a big BBQ with our friends and their families.

June- Adam and I both turned 28 (aye!). We took a trip to Como Zoo. We renovated our front porch. 

July- Spent many Monday evenings watching the puppet wagon. Trip to Tulsa, OK to see family and surprise my BFF! 

August- Ryker's last month of in home therapy. He really started to show some awesome speech progress with lots of signing. We spent a lot of time at the park and pool before summer ended! 

September- Ryker started school. We took the kids to see Yo Gabba Gabba Live. Helped plan a big 50th anniversary party for my grandparents. 

October- I went to Kansas City with my BFF's. Halloween. Our backyard patio was finished, finally! 

November- Hosted Thanksgiving and went black friday shopping. I feel like Makaylin really started to lose her "baby face" around this time of the year. She is looking more and more like a preschooler every day! Ryker made great strides in his play and imitation this month. We had a surprise party for my dad's birthday.

December- We introduced "Elf on the Shelf" to the kids this year. St. Nick's Day. Christmas baking with my mom and sister. Christmas get together with my girlfriends. OSU hammered OU in Bedlam! Makaylin got her first hair cut. A great Christmas with family. 

We are excited to see what the new year brings! We're starting off January with some doctor visits for Ryker- he'll be getting some more in-depth testing from the endocrinologist for a possible growth hormone deficiency. The preliminary testing shows a deficiency, but I guess there are more tests that need to be done to pin point what is going on. 

Thank you to all of you who have followed our family's journey this past year. It has been a journey that will continue for the rest of our lives- always adapting and being met with new challenges. We appreciate the unconditional love and support from our friends and family- we couldn't have gotten through 2011 without you! Cheers to a new year!