Tuesday

Whew...we've been busy since the last time I've updated. I worked a couple shifts, we had Shoemaker Christmas, had a little man turn 1 and made yet another trip back to Omaha. Somewhere in there I did laundry...I promise! :)

We remain status quo...which I am content with. Chris is doing great...minus the big bruise on his head I accidentally inflicted this afternoon. We were playing in the kitchen here at Grandma K's and...BONK...onto the hard floor! I can say however, that he has still had less bruising to his cranium than either one of the older boys have! :)

The funny thing is that he's started grunting and growling. To get playing with the big boys or getting mad at you he growls. He'll even just crawl up behind you and growl at your heels. It's hilarious. I wish I could share it with everyone.

Anyway, we are on to 1 of our last 5 treatments for the year. I was reminded today that we have been making this trip back and forth for 3-4 days at a time since the Week of Nov. 8. Oy! I'm not sure where the time has gone!

Anywho, he is doing great and tolerating treatment just fine. His every move and everything that goes in to his mouth has started to be documented. After my scare last week, I have resorted back to baby food which Jen wanted me to get him off of, but it is the only constant that I can keep with going from Aunt Claire's to Grandma Shoe's to daycare. In the last couple weeks I've learned about watching for residual and what to do if it's there and how to clear if it is and how to change the viscosity of the food if it is...I didn't feel like sharing that with all the people that feed him and he does great with baby food! :)

Jen and I have come to the conclusion though that we thing his swallowing is worsened by the copious amounts of snot and mucous he has. I have been giving him a decongestant, but it makes him so sleepy and when he fatigues and we try to eat...you guessed it...more issues...so it's just a viscious cycle.

Tomorrow we will have therapy in the a.m. and then see our favorite Dr. K around noon to see what he thinks about the mucous issue and to just discuss with him what he's thinking. I can share with you that, after 3 emails and much, MUCH suggestion from him, we see genetics...in March. That was the soonest we could get him in. He is however, on the cancel list. Dr. K's point was the fact that with hypotonia and the dysphagia, they are not definite diagnosis. They are symptoms that can lead to other diagnoses, many of them syndromes. He stated in his emails that there are some pretty serious ones that we may want to know about for the future.

With that said, if you read the front page of the Omaha World Herald Sunday, you may be following me, if you didn't I put the link on my facebook or google it! It's worth the read...just keep kleenexes handy. I will be honest...I bawled through most of it. The only symptom that this child had that Chris hasn't...respiratory distress and with our mucous trouble and aspiration problems...it worries me. Now, do I think he has what this other baby had...no, I would hope if he did signs of it could be picked up on the MRI, however, it just makes a person think.

It's been hard lately watching kids his age and younger, walk and talk and do things that he should be doing and not feel sad and frustrated about it. I remind myself that things could be TOTALLY worse, but I know he'd love to be running with the big boys. He'll catch up eventually I know, but I just worry as to how long that will take. Our EDN services were denied because he is where an 11 month old should be so he's "Not that bad." Cognitively he's on track.

We celebrated Chris' birthday Sunday with family and it was so much fun. Chris ate it up. I propped him on the table to open his gifts and he did so good! We are truly blessed to have such an amazing family and close friends! We even celebrated Jack's birthday (our nephew) which is tomorrow.

This week has been better for the big boys. They got to come down with me and get completely spoiled by Grandma K on Monday, which then drove Mom nuts Monday night! God bless the woman, but I'm pretty sure she does it on purpose...she just needs to wait til her son is around!! :) HAHA! Kidding! They had a ball. Tonight we went to the Western Heritage Museum and after a 45 min wait for Santa we were all ready to run wild! The boys were SO good though.

They've had fun though. Today after Chris' therapy I took them on a tour of my favorite places in Omaha and showed them where I used to live when I met Jason and where my Great-Grandma Chris lived and where Grandma and Grandpa Shoemaker met...technically. It was so much fun. Drew loved every minute of it and Matt could care less. Chris slept through it all!! :)

We head home tomorrow and then I work my 2 shifts, including part of the holiday. I would be lying if I didn't say that I am looking forward to our break from therapy. It is doing great things for him, but it's running me ragged. I told Jason tonight that I am taking a 24 hour personal day in January! :) He was okay with it...I think he knows it will be good for his health and safety too! :) HEHE!