Wednesday, August 27, 2008

Home again

We got home around 9:30 last night. It was a good trip. A very good trip, I would say.  Sadly, there was no promise of a miracle cure.  However, it was great to talk to someone who had so much experience with mitochondrial disorders.  It was helpful, although perhaps not what we wanted to hear, to know that he agrees that it most likely is Leigh Syndrome.  He suggested some vitamins and supplements to try that have given some very good results in other kids.  He said that the odds are good that Timmy will live 1-3 more years.  If he gets an infection, that could shorten that time frame greatly.  Or he could be one of the kids who hangs on a long time.  In the end, we know that the Lord is the one who numbers our days, but that at least gives us an idea from an earthly perspective of what the future MIGHT hold.

When we left, I had many fears about the trip.  And I am thankful to say that the Lord provided.

Before we left:
  • I was stressed over how I would ever get everything packed in time.  (Cindy came by and spent the whole day here on Monday and helped me get everything together and also helped me make sure that Timmy got his naps.)
  • I was stressed over the details of managing Timmy's meds and feedings on the road. (There were a few small glitches but we got through them.)  
  • I was scared that Timmy wouldn't get enough rest (he mostly did), especially at night in the car (he fussed until I thought he might puke or have a seizure and then he fell asleep instead - in both directions.  Then he woke up just 5 minutes or so before we got to our destination).
  • I was fearful that he would puke or have seizures (he didn't do either).
  • I was afraid that we would go all that way and then only end up seeing the doctor for a few minutes and that he would be in a hurry to see the next patient (he stayed with us for over 3 hours and answered all the questions we could think of!).  
  • I was afraid that Timmy would get poked a lot (especially when I saw how many vials of blood they wanted), but they were able to get tons of blood for lots of different tests with just 2 pokes.  The other test they did was with a saliva sample from the inside of his cheek.  How easy is that!
  • I was afraid that the doctor would really push doing a muscle biopsy, which we are just not sure if we want to do.  (Yes, of course he recommends it - and he explained the reasons for it.  And then he simply suggested that we discuss it and let his nurse know what we want to do.  We still have not decided, but I appreciate having the time to think it over.)

8 comments:

Mom/Nana said...

Wow, thanks for the incredible update! Also, thank you, Cindy, for being the Nana in residence! I wish I were there, but it sure is good to know that all the needs are being cared for.

What a lot of praises in this update. We will always be praying, and will enjoy every day we have with Timmy. Isn't that what we should be doing with everyone? God has given us insight, because of the Leigh Syndrome, into how much time that might be, but we erroneously think we've got all the time in the world with everyone else.

Love you immensely!

Kathie said...

Terrific update! Praise God for so much care during this trip. I was just down in So Cal, but you had just gotten from the hospital and I figured you could use a little peace and quiet, so I didn't bug you. I'll be back toward the end of September if there is anything I can do for you.

And Mom/Nana is brilliant--awesome thoughts from her.

Lisa Swanson said...

Glad you had a good trip. I remember our first visit with Dr. H, and it hit both of us like a Mack truck. No one before had every mentioned life expectancy. Please know there are many of us out there with the same diagnosis, and sending you all our love and prayers.

Anonymous said...

Dear Lara,

I just wanted to give you a few words of encouragement. I know from experience what it's like to travel with a pump, pole, formula, bags, extensions, meds, etc. Then, when you add in all of the "regular" baby stuff...ugh! But, believe me, you will soon be an old pro! We take Dalton camping, to hotels, etc. The pole, and everything else, go with us. Now that he's older we also have a wheelchair, walker, bath chair, etc. Sometimes we feel like the "Beverly Hillbillies" with stuff jammed and crammed everywhere!

And in regards to being at home: once we got an adaptive stroller we were able to go to the store, for walks in the neighborhood, etc. Ours had a tray in the front to hold Dalton's toys. He enjoyed sitting in it in the kitchen while I cooked, did dishes, etc.

I guess what I'm trying to say is that I know all of this is so foreign and overwhelming. But, you are such a devoted mother, and you WILL make all of this work!!! If you ever want any practical tips, let me know. At this point, Timmy is VERY similar physically to Dalton at the same age...so, I've been there and would love to help.

Call me anytime.

God Bless,
Julie R.

Mom/Nana said...

God bless you, Julie!

By the way, Lara, what are the reasons for doing a muscle biopsy?

Ingrid said...

Praise God for answered prayers! And for peace and restoration when needed. He's so good!
And 3 hours??? That is AWESOME!!! We continue to pray for our sweet nephew (/cousin) and love to hear updates like this! We love you all!

mom/Nana said...

I have a follow up question to this blog post: did you ever get vitamins and supplements to include in Timmy's feeding?

Lara said...

I ordered the vitamins online and am waiting for them to be delivered.