Crawling position

In physical therapy Timmy also practiced holding himself up in a crawling position. He still needed quite a bit of help but this was one of the ones he did best at.

Textures

One thing we are learning in occupational therapy is feeling different textures - like putting our hands into a bowl of pebbles or beans.

Sideways sitting

Here is an example of something we are learning in physical therapy: sitting on one side, leaning on one hand.

Mic-key button

Nana was asking about what the difference is with Timmy's new mic-key button compared to his old tube. The main things are that:

• the G and J tubes run side by side rather than having the smaller J tube inside of the larger G tube
  
• both tubes are wider and therefore less likely to clog.  One bonus of this is that I feel more comfortable giving his vitamins, because I can put them directly into his intestines and reduce tummy ache.
  
• if he is not being fed, the only thing attached to him is a small "button". The tubes themselves can be removed. This would be nicer if he weren't being fed all the time, but even so it makes it easier for baths. And I can rinse the tubes out in the sink rather than always having to give Timmy extra water to clean the tubes. And if Timmy did get a clog on the part that's outside of his tummy, I can remove the tubes and replace them.
  
• when the tubes are replaced, (as long as there isn't a question of whether they are still in the right place or not) there is no need for endoscopy and sedation.  It should be a much simpler process.

Your Timmy fix

Here is a new picture from today for those of you who need your daily Timmy fix. :-D

At home, sleeping off the anesthesia

The procedure this morning went well. Timmy has a new mic-key j/g button. The IV took just 2 pokes. He woke up a little before 1:00 and was able to take an ounce and a half of pedialyte. So we were sent home, started up the feeding pump with a mixture of formula and pedialyte, changed a diaper, welcomed a friend bringing us dinner, and Timmy went right down for a nap. Whew! Busy day!

Smiles and tubes

Although he doesn't like to smile for the camera, Timmy has been smiling bigger smiles today than I have seen in quite a while. It really warms a mama's heart.  :-)

Also tomorrow Timmy is heading back for one more endoscopy to replace his feeding tube. But this time it will be replaced with a more permanent tube that should be easier to replace and hopefully will give us fewer problems. So please pray that it will go well and that we will get the better tube and be discharged right away. Please pray that the sedation won't bother him too much as it frequently makes him feel sick to the stomach. And please pray that they will be able to get the IV with very few pokes.  Thanks!!

Outings

Timmy got to spend the day today with his friend Rachel and her mommy and daddy while HIS Mama and Daddy got some much needed time away.

A young musician

Since books and music are some of Timmy's favorite things, they are some of the best ways to keep him busy on his tummy.

The new normal

The days have been busy this week. We have a couple months of physical, occupational, and speech therapies coming up at the outpatient clinic. There Mama will learn as much as she can so that we can continue them at home after that -- with check-ups on occasion to refresh our memories. Right now we are on a big push for 15-30 minutes per day total of tummy time to see if we can get back any of the head control and sitting abilities that Timmy used to have.

Also Mama was noticing a few things that just didn't seem right -- not the least of which was an unexplained loss of strength in the last few days. So we saw the pediatrician yesterday and found that he has another slight urinary tract infection. As soon as we started the antibiotic, he started sleeping better. Yay! So now there are a couple more tests to do to see if we can figure out what's up.

After the haircut

Before the haircut #2: closeup

Before the haircut #1

Mito FAQ's

I was just trying to find a good summary of Mitochondrial Disease to show to the Occupational Therapist tomorrow, and I really found this FAQ list to be helpful. So I thought I would share.

http://www.mitoaction.org/mito-faq

Getting stronger

The last few days have seen some nice improvements in Timmy's head and torso control. I have sometimes been able to carefully let go of his head when holding him upright. We are close to being able to use the Bumbo seat again. Hopefully soon.

Yesterday we actually ventured out of the house to meet a friend for lunch -- a half hour drive away. I was nervous about being out that long and especially in the heat. It did really throw off the sleeping routine, but it went really well and we had fun getting a change of scenery.

Also, stay tuned:  on Friday, Mama and Timmy are getting haircuts!

Timmy TV ;-)

Thank you to those of you who gave us cash for Timmy's birthday. We used some of it to buy peace of mind in the form of a video baby monitor.

A couple days ago, at bed time, Timmy was having a hard time falling asleep. I rocked and danced for quite a while, but it was not working. So I set him down to get a few bites of food before trying again. I figured I could hear him on the audio baby monitor. But he was able to fuss silently until I barely could hear him puking. Even though no one likes to hear a baby cry, I definitely prefer it over silent stiffening and puking. So that is when I decided that audio is not enough.

This way I can see if he is awake or sleeping, content or agitated (and therefore puking or arching his back or stiffening). I also feel more comfortable sleeping in my own bed if I know that at any time I can just look up to see what he is doing. So thanks!!!

The "new" crib

Pushing up a bit during tummy time

Go Timster!

Hanging out at home

Since the tube was replaced, Timmy has been gaining back all of the weight and some of the strength he lost from those hours of not being able to eat. When he is not napping or doing stretches or reading books, he hangs out in his wagon a lot. Mama can wheel him around the house that way as she makes formula or gets medications ready.

Also, we were able to borrow a crib that has sides that lower. I had originally picked a convertible crib to grow with Timmy, but now he is so heavy to get him over the side, and the feeding tube keeps getting caught as I lower him (OUCH!).  So I am so thankful that we were able to borrow a different one.

Going home

Going home

Timmy's new tube seems to be working ok, so I am running around doing the errands we need to do to leave for home. Hopefully we will be out of here within the next hour.

New tube placed

Timmy is awake and has a new tube. Hoping to go home in the next few hours.

Staying the night

Multiple attempts over the course of the day to unclog the J tube were unsuccessful.  By this evening, we could get a wire a little bit further into the tube than before, but no liquids would go through.  It's been decided that the tube needs to be replaced.

Timmy's been admitted for the night; we're in the only unit that we didn't visit on the fifth floor during our previous tour (apart from Cardio).  He has an IV now for hydration.  The doctor is going to try to get us in first thing tomorrow morning to do the replacement.

The replacement tube will be just like he has now; they want to wait at least a month before doing the mic-key button.  We don't yet know how the replacement affects the original schedule.

Heading to the ER

We are on our way to the ER to unclog the tube.