Another sweet sleep photo

Sleep smile

Yes, he really is sleeping. :-) So sweet.

A new 'do

Timmy with his new frog in his new outfit

Opening presents

Merry Christmas!!!

May God bless you richly this Christmas!!!

Our day at Sea World

We enjoyed a fun (but rainy) day yesterday at SeaWorld. We went with our nurse and 3 of her kids, and we met up with her friend and HER 3 kids. We enjoyed a nice breakfast with Shamu (somewhere behind Marshall in the picture) and Santa.

Timmy woke up when my alarm went off early in the morning, so by that time, he was exhausted and slept through the breakfast and his visit with Santa. Later he did wake up and got to see some of the other shows and exhibits.  He got to see Clyde and Seamore as well as the Sesame Street 3D show.  (I really wish I had gotten a picture of him in the 3D glasses!).

A fun time was had by all!

A snuggle with Santa at SeaWorld

On the way to Sea World

Taking a nap on the way to have breakfast with Shamu and Santa.

Taz

New shoes

Check out Timmy's shiny new shoes. They are extra big and extra wide to fit over his new braces.

Yay! Hopefully this will give him some extra help with standing.

New ankle braces

To give Timmy ankle support for standing and to prevent his feet from turning in any farther, Timmy has cool new Taz ankle braces. (Taz is on the back of them.)

Timmy fix

A cute little pouty face while he takes his nap.

Highlights from Nana's visit

Nana was here for about the last week.  We were sad to see her go this morning.  Pictures from her visit are now available in the photo gallery.  Here are some of the highlights from her visit:

• Laughter and playing with Timmy (yes, he's even had some good giggles, although he usually giggles with a straight face!)
• Nana and Mama and Daddy went to the Candlelight Processional at Disneyland... Yay!  Fun!
• The ophthalmologist said that Timmy's eyes are healthy.  His tracking may come and go, but for now he does not have retinitis pigmentosa (tunnel vision/ night vision).  Also, some time around when the seizure meds were stopped (a coincidence? we don't know!), Timmy's eyes stopped "dancing".  Yay!  
• Timmy's medical supplies got organized, and the cleanliness spread.  The dining room table has now become a dining room table, because the desk has now become a desk.
• The Christmas tree is up, and the house is decorated for Christmas.  Timmy fell asleep when Nana and Mama were decorating the tree, and when he woke up his face lit up at the sight of the tree.  It was the closest thing we've seen to a smile in a long time!
• We met up with Timmy's teacher at the Christmas tree farm.  Timmy got to see the animals in the petting zoo.  He even got to drop some food into the pig's dish!  Those sheep were pretty loud, though.  They seemed a little scary.  The pine branch was prickly, and Timmy figured that if he hid his face from it, it would surely go away.  

Giving thanks

Now that the turkey and its trimmings have become leftovers, and life has quieted down at least for a few days, I wanted to take some time to list out a handful of the many things I am thankful for this Thanksgiving. So here goes:

• For Jesus's death on the cross and the hope of heaven.  For the hope that, as a citizen of heaven, Timmy's body (and Marshall's and mine, too for that matter) will be transformed to be like Christ's  - and that he will then have all the energy he could possibly need.  He won't need hand splints or leg braces.  He will be able to see and hear and run and jump and sit and stand and smile and giggle.  (See Philippians 3:20-21)


• For my husband, who has loved me and been my partner through the joys and trials of nearly 10 years of marriage.


• That the Lord has held our family together and provided for our needs. It has definitely not always happened in the way I would have liked or expected, but surely He knows what is best better than I do.


• For Timmy. For his comfort. For his newfound ability to fall asleep when tired. For the giggles and the smiles. For each time he holds up his head or makes progress toward sitting or standing or crawling. For the cute button nose and those adorable blue eyes with the long, long lashes.


• For the way that our families have supported us. For the sacrifices they have made to visit. For gifts of time, money, toys, clothes, music and handyman skills - just to name a few.  For video chats during the times when they are far away.


• For our nieces and nephews, both born and on the way.


• For so many friends who have given of their prayers, friendship, time, food, money, car, tires for the car, laundry skills, medical skills, haircutting skills, chiropractor skills, babysitting, dog-sitting, gifts & gift cards, clothes, furniture, diapers, trips to the store, etc., etc., etc., etc., etc. - even a star named after Timmy!  :-)  We are just in awe of everyone's generosity toward us this year, and so thankful.  I'm behind on my thank-you notes, but I want you to know that we appreciate it all.  It is also just so incredible to know that if we have a problem as a family, we have people that we can call who are eager to help.

Adam and Timmy

Timmy enjoyed hanging out with Uncle Adam.

A Thanksgiving snooze

The Thanksgiving meal

We are so thankful that Marshall's brother and his family could join us for Thanksgiving! It was so fun! We miss them already!

Ready to eat

Our nephew got to be the first one to be seated at the table.

Thanksgiving food

We had all of the traditional Thanksgiving food: turkey, stuffing, mashed potatoes & gravy, spiced cider, sparkling juice, strawberry pretzel salad, green bean casserole, etc.

Visit with the mito specialist

Sadly, the visit with the mitochondrial disease specialist resulted in no new information. So far we have tested for the most common defects in the mitochondria — and they all came back negative, no problems found. This means that we have a rare case of an already rare disease.

We were able to ask our questions, but the answers tended to be that we just don't know what will happen, so we just need to continue with what I call The Big Three:

• rest
  
• nutrition (in particular, the "usual" supplements that are recommended for mito patients)
  
• preventing infection (and treating any suspected infections quickly)
  

The doctor recommended another set of tests that would be more invasive than the ones Timmy's had so far. If we decided to go ahead with those, they could all be done at once, which would be good. Mostly it depends on how determined we are to know precisely which part of Timmy's cells is broken. The tests will most likely not help Timmy at all, but they may give us a better idea of how likely it would be that future children would have the same problem. It's a tough decision.

Snoozing on the way to San Diego

On our way to see the specialist at the mitochondrial & metabolic clinic.

Babysteps to crawling: after

Whew! That was hard work!

Babysteps to crawling: before

Even though he doesn't have the strength to hold up his head and torso, Timmy was working hard trying to crawl a little.

A new cousin on the way

We are so excited to announce that Timmy is getting a new cousin!  Aunt Beth and Uncle Jason are expecting their first child sometime around Mother's Day.  We can't wait to meet this new family member!!!!  Their dog, Kenobi, is going to have to learn to share their attention. :-)

Worn out from playing

We were playing with the frog and singing frog songs and feeling the texture of the smooth rocks and getting in some tummy time. But it was just so tiring that Timmy fell asleep right where he was. :-)

After a long day

We drove down to Murrieta to visit with Uncle Ron and Mary yesterday, and it wiped us right out.

Snuggles with Grandpa

Woody's Boathouse

One thing that we did while Grandpa was here was drive up to Lake Arrowhead Village and eat at Woody's Boathouse.

Playing with Grandpa

We all had a great time playing together this week. We were sad to see Grandpa leave this morning. We are praying for safe travels as he has a long day of both flying and then driving back to Western NY.

Thursday update

In these last days we have really been enjoying our visit with my dad.  He and I were able to play some violin/ cello duets for Timmy. We think he liked it, but it's hard to tell. Dad has also been a fabulous help at fixing random things around the house. The toilet doesn't leak anymore, there are energy efficient light bulbs in place, and the carpet tacks that used to stick out and hurt our feet have been removed — just to name a few things.

Medically speaking, Timmy is doing pretty well. He tested negative for the urinary tract infection.  He has seemed pretty weak lately, but I think it is improving.  And despite the weakness, he seems pretty comfortable, although somewhat melancholy and not terribly interactive.  We got a couple little giggles out of him today, which he has not done for weeks. Those little giggles are just really good for the soul.  He continues to be doing well in tolerating his formula and continues to be free from vomiting.  We had a great meeting with the GI doctor this week; within the next few weeks we will be trying flax seed oil to help his immune system, and we will be trying out a toddler formula next month as well.

Our nurse had jury duty today so I'm hoping she doesn't get picked. I need her!!

Timmy's sleep has improved significantly, which helps all of us.  That in itself may be helping his strength. It's hard to say. But I'm sure that teething was a real energy sapper, and I am very thankful to be done with this round.  Also, I see a huge improvement in his ability to fall asleep by himself when he is relaxed and sleepy.  What a relief that is!!! It used to be that he simply could not fall asleep without considerable help and almost perfect timing.  If you missed that
precious window of opportunity, the meltdown that followed was just not pretty, and sleep was even harder to come by.  So this change is really helping my stress level.  I wonder if the reduction in the number of meds is helping, or if it is simply that he is growing.  It's hard to say.

Signing off for now,
Lara

Ahh

We worked on range of motion stretches today in PT and it was so relaxing that Timmy fell asleep. So I put him in his stroller and we sat beside a fountain for some R&R. Mama just got some books from Papa in Chicago and has one all ready. What a treat!

Lost and Found

Found in our garage:  Motorola hands-free cellular phone earpiece.  If it belongs to you, let me know.

Lost:  Timmy's blue hand splints and his blue and brown bolster pillow.  If you have been around our house and happened to have seen either of these, please let me know.  I use both of these with Timmy every day, or would if I could find them!

Thanks!

Self expression

Being able to express emotions is something that we just take for granted. It has been an odd journey watching Timmy as he has seemed to gain and lose and occasionally gain back the ability to do things like cry, smile, and laugh. A lot of times it's his eyes that tell the most about what is going on inside that little head. If he is really upset, you will see his whole body tense up and his back arches and he really moves around - but all you hear is the movement and some grunting. If you tickle him, the response varies from an actual giggle to a somewhat happy sounding grunt. If he likes something, there are periods of time when he will smile about it, and other periods of time when the smile doesn't get any bigger than the Mona Lisa. You can see in his eyes and in the corners of his mouth that he is considering a smile, but you never really see the full thing.

Right now he isn't smiling much, but interestingly we are starting to see a few signs of crying. A couple of times now Timmy has made a brief crying sound in his sleep. And several other times in just the last day or two he has pursed his lips like a baby bird and let out a little cry. Today when the nurse arrived and Brutus barked at her, Timmy actually cried about it.

In other news, Timmy is growing like a little weed. On Sunday when he woke up, he seemed to have suddenly moved up to the next clothing size. His body strength is pretty good and I am considering trying to see how he will do being propped in the pack and play like I used to do. The nurse comes 2.5 days a week and is a great stress reliever. Some awesome things have been happening in our marriage, and I am just so thankful for that.

Wishing you faith, energy, and hope...

An outing with Oma

Lara, Timmy, and Oma went on a trip today to the mission at San Juan Capistrano. I just posted the pictures, so be sure to check them out in the photo gallery! I also posted a second album of a random assortment of pictures from my iPhone this month.

Also of note, Timmy has not puked in almost a week now - not once since Oma has been here. I think may be the first week without puking since he was admitted to the hospital in early July. Clearly his tube is now in the right spot and he is being fed an amount that is pretty appropriate for him!

Lastly, our nurse that started this week is fabulous. She is patient-centered, good at getting Timmy to sleep (although none of us have been very good at helping him to stay that way), and she sends text messages to let me know how he is doing when I am out. So hopefully we can keep her around!

An "ah ha" moment

This morning we discovered the probable cause for the recent sleep deprivation - 2 new teeth on the left side of his mouth. (That means a new total of 8 teeth.) It is comforting to know that this is a normal kid thing and not a new manifestation of his Leigh Syndrome. Whew!  Hopefully we can get through this quickly and start getting sleep again. Plus we can get out the teething remedies and hopefully they will help. Currently we are doing teething tablets and Tylenol and an occasional cool washcloth. :-)

Help has arrived

After I posted about sleep deprivation last week, our neighbor was able to come over and rock Timmy while I got a 2 hour nap. Yay!

Then we had our getaway at the Mission Inn on Friday night. Yay!

Then on Saturday, we got a last minute visit from my mom (aka Oma).  She has just been fabulous — helping with the sleep deprivation and the general household organization. She is here for the remainder of the week. Yay!

Then today our new dog-friendly home health nurse started. If all goes well, she will join us 3 times a week so that Mama can get a break and get the necessary chores done. So far I like her. Yay!

Also, last night Timmy slept through the night again. Yay!

Please pray for Mama and Timmy for continued healing from colds and that Timmy will continue to sleep through the night so that we can ALL feel better soon!

The view from the room on our mini vacation

One night of relaxation and uninterrupted sleep.

Help request

The sleep deprivation around here is reaching epic proportions. We will be out at an appointment in the morning, but if any of our healthy, existing SoCal friends are available for 3-4 hours or so starting around 11 AM or noon to come by to just rock a child so that we can both sleep, that would be SO appreciated. Call or text me after 7 AM, or email me any time. Otherwise I will call around to find someone. Thanks.

Prayer request and praise

Praise: Timmy's overall strength continues to improve. He seems to be doing more and more standing lately.

Prayer request: We are struggling to get sleep. Timmy woke up at 3:30 AM feeling uncomfortable and puky. He startles at every little sound and did not nap longer than 10 or 15 minutes all day. He fell asleep at bedtime but then woke again shortly thereafter. Right now he is asleep in my arms and he is due for a med so I am going to have to try to put him down soon. But we both really need him to sleep at night and nap in the day. Even just at night would be great.

Also we have a nurse who will be helping us out Mondays, Tuesdays, and Wednesdays. Please pray for discernment and good relationships.

Monday night update

Just wanted to confirm that we did make it home yesterday.

Timmy still is having a bit of trouble keeping things down, but the new tube is working much better. His tummy contents do not look formula colored, so that means that it's doing its job and keeping the food in the intestines and not the stomach. He's having good diapers, so hopefully the puking will subside a bit once his body recovers better from the surgery.

I must say that as much as I don't like to be admitted to the hospital, staying the night in the ER is worse.  It is just impossible for a kid to sleep, which makes it impossible for a Mama to sleep either.  We actually did manage to both fall asleep at one point, but then they woke us up to switch rooms, and the rest of the night was pretty miserable with an overtired Mama and child. Timmy was up almost the whole night, and then when they went to sedate him it took 4 doses and I still don't think it worked very well. He was just so wired from insufficient sleep that it worked against the sedation for the procedure.  They said that he clenched his jaw and refused to open his mouth to put the scope down it, so they really had to force it. Poor kid!

However, there were some really bright spots, too:

• We had private rooms both times.
  
• They got the IV in one shot!  And it was the same nurse who de-clogged the feeding tube a couple of visits ago.  She used a hint from our nurse friend on where to look and right away she got it.  Praise the Lord!
  
• As we were waiting, Marshall and I were sitting there reflecting on how rare it is to come across people who are familiar with mitochondrial disease. Then the resident walked in. We had never met her before, but she said that she is a friend of some friends from church and she has been praying for us and has visited this blog! What a blessing that was! It was just really an encouragement.
  

Please keep praying for us as we look for a home nurse.  The first nurse we had was only here for one day and found a full time placement elsewhere.  Since then we have had the trainers come in as subs, and they are wonderful — but we can't keep them!

Quick update

The x-ray yesterday came back that there were no blockages in Timmy's digestive system but the J tube was pulled quite close to the stomach. Today they replaced the tube (AGAIN) with a longer one that will hopefully stay put better. Right now we just restarted his feeds and we are attempting to make sure that he will wake up OK from the anesthesia. Then hopefully we will head home.

Heading to the ER

While we have had some small poo diapers, they have been just that — small. We are headed to the ER.

Dehydrated again

Warning:  This may be considered a "too much information" sort of a post.  ;-)

Please pray for good diapers this morning. The doctor on Wednesday confirmed my suspicions that the vomiting is due to weak digestive muscles that are having a hard time getting the food through fast enough. I am concerned this morning that Timmy may be too blocked up to be allowing food through. He needs to have a good dirty diaper and even his wet diapers aren't very wet. If we can't resolve this quickly, we will need to head to the ER to avoid dehydration and malnutrition. :-(

UPDATE:  noon

I have been pumping lots of pedialyte through Timmy's tube, and we picked up Timmy's prescription for erythromycin as well as some baby laxative.  We also have permission from the GI doctor on call to give 1-2 ounces of plum juice per day.  So far I gave the laxative and the erythromycin, and we did have a medium sized dirty diaper.  So I am still hoping for more, but this is a great start.  Now we work on getting him good and hydrated and we see if we can re-start the formula and get some calories and vitamins back into him.

UPDATE: 3:30 PM

Timmy is still not tolerating his formula.  I just gave a second dose of erythromycin and laxative, and an ounce of plum juice.  If there is no poop within the next hour or so, we head to the ER.  :-(

So big!!!

I was just curious to know if any of you who read our blog know of how we could "upgrade" this papasan chair for a bigger kid version. Timmy is quickly outgrowing it, but it is a lifesaver during those times when he doesn't feel good for some reason and we want him to be in a comfortable place close to us where he can fall asleep when he is ready.

Here is what I like about it:

• it keeps him at a good angle for his reflux
  
• it is soft and well padded, and the padding can be removed and machine washed when he pukes on it
• I can move it around the house as needed
  
• it straps him in, so he can't fall out during the night when I am sleeping, and he can't wiggle himself flat during the night
• if we travel, it folds flat to fit easily in the car
  

Actually, if you know of a bigger kid infant swing, I would be interested in hearing about that as well.

San Diego (or not), baby carriers, etc.

Well, we had a post-hospital follow-up with our regular neurologist on Wednesday afternoon. He said that the test we were heading to San Diego for could be done at the lab at our local hospital. So at the last minute we called the doctor on call in San Diego to see if we could do it that way. He agreed, so we stayed home after all. Marshall is still taking the couple of days off to catch up on some projects at home.

The neurology appointment went well. We were the last patient of the day, and the doctor really took his time to answer questions and listen to what I had to say. He agreed with me that it seems likely that Timmy's "seizures" were probably a really bad reaction to being WAY overfed and on some meds that didn't agree with him, and we are starting to wean him off of his seizure meds. This is fabulous because they seem to upset his stomach so hopefully he will start to sleep better and feel more comfortable in the upcoming weeks. The bad news was that he suspects that Timmy is starting to develop signs of tunnel vision, which could potentially lead to blindness down the road. This is somewhat common for Leigh Syndrome kids, but it is a big fear of mine -- especially since he does not have the strength to move around much, and he seems to enjoy books. So I need to make an appointment with the eye doctor next. Maybe more vitamins too?

On a more positive note, my Bible study small group pitched in to buy us a new baby carrier. It arrived yesterday and I love it already. Just tie and go! No buckles or leg slots to maneuver. We walked around the outdoor mall this afternoon (stopping of course at the Apple Store to look at the new laptops) and as it got dark, Timmy fell asleep in it. Yay!

Wednesday update

Praises:

• Timmy's coordination continues to improve. As you can see, if I lay him next to his musical table, he actively plays with it.
• Despite some threats, my own health seems to be doing well overall.
• The doctor has approved us to not give the medicine that was making me have to get up in the middle of the night.
• We were given a gift certificate to the Mission Inn and we have some dear friends who have agreed to watch Timmy overnight so that we can get away for a night next weekend.
• Timmy has not had any seizures since we have been home.

Prayer requests:

• For wisdom as we decide about what and how much to feed Timmy and what meds he needs. He has an extremely sensitive tummy.
• Vomiting continues to be an issue. Please pray for wisdom on how to keep it at a minimum. Please also pray that his lungs would be protected from pneumonia caused by the vomiting.
• That we would find just the right nurse to give Mama a break - someone wise and kind and dependable.
• For my health - especially for my endometriosis and some dental issues that may require more surgery.
• For sleep for all of us.
• For traveling mercies as we head to San Diego tonight for some blood tests tomorrow.
• For continued protection from seizures.

This physical therapy stuff is hard work!

Today's session focused on critiquing Mama's technique.

Playing

Ok, so this is a horrible, blurry picture. But look at what Timmy is doing! He is sitting (with some help but still doing it nonetheless) and hitting the buttons on his little turtle! HE hit them. I didn't have to do it for him. Yay!!

Scooter

We also used a scooter to push off in a crawling position.

Smaller bolster

Therapy

Today in therapy we practiced side sitting using a bolster for support.

Watching Brutus #2

Watching Brutus play ball

Check this out! Timmy was watching Brutus chase after his ball.

Small earthquake

Just in case you are worried, yes, I felt the small earthquake a few moments ago. I guess it was a 4.1 just north of Yucaipa. I was in a light sleep stage but everyone else slept right through it. -L

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