Tuesday, May 24, 2011

The Start of a Marathon

We had three appointments on Monday. First thing in the morning we met with Jack's occupational therapist who will be with us for the next two weeks. Karen is the head of the feeding clinic and she is great! She is very relaxed and let's Jack take his own pace with eating. Right when we got there, Jack was put in a high chair and offered food. He took some bites of yogurt and started his love of Cheeto puffs. Jack likes to lick the cheeto a few times, then take a big ole' bite. Once that bite of cheeto is in his mouth, he immediately takes it out and inspects it. This is actually a good thing. He used to just gag or vomit it out. Sometimes he even decided to put that bit of cheeto back in his mouth to try and eat again! Also a very, very good sign. Throughout the course of our first eating session, he actually swallowed quite a few crumbs of cheetos. He also ate a good amount of yogurt, which I fed him off a spoon. And he drank a bit of whole milk, although very clumsily (most of it fell down his chin).

After our first visit, we met with the physician assistant who will be following Jack through his wean. He was weighed and measured. She talked about the most common issue with weaning - constipation - and then she did a full assessment of Jack. This was probably the highlight of our day. She was so positive about Jack and what she thinks his abilities are, and most importantly, could be. She told us about the possibility of Botox treatments(yes, Botox) for Jack's stiff left leg and arm. She told us about constraint therapy, which would require a cast on Jack's good arm for about three weeks to make him use his left hand, which he neglects. Hearing about all these new treatments got us so excited about the possibilities for Jack. The PA kept on reiterating how great she thought Jack's movement was... how he has a good range of motion and a desire to move and just needs some specific therapy to help him along. We haven't had a Dr. visit like that in a very long time. She was so encouraging. She was amazed about how well Jack is doing, given his extreme prematurity.

For lunch we went back for some more feeding therapy. Jack dove right in and ate more yogurt and a bit of cheetos. They try not to add too many different kinds of food, because ultimately, this is practise and they are more concerned with volume. We were scheduled to come back during the afternoon for more eating, but Jack feel asleep and took a good long nap. He must have been so exhausted and overwhelmed at everything from the morning (so were we!)

Yesterday evening, we went out to a yummy restaurant and Jack got to try Middle Eastern food for the first time. He actually really enjoyed hummus and a mango shake! He also ate some bananas and peanut butter before bed and got five ounces through his tube before bedtime to help him sleep. That is all the formula he is getting through his tube now - five ounces!

Today Jack is hungry. He's really hungry. Now if he will just make the connection between eating and hunger... which I think is happening. We pray that he will learn to LOVE food. He has actually done the best with texture today that we've ever seen. He is making baby steps. I almost cried this morning during his first session because he actually swallowed a bit of graham cracker. He didn't gag. It is hard to describe that feeling, but for us, seeing little crumbs make it into Jack's tummy is such a big deal.

We make the ten minute walk to the hospital three times a day now. The weather has been typical Seattle overcast, with sun occasionally peaking through. And we always have our umbrella ready.










And our room is cozy where we spend lots of down time reading and playing. Jack loves his books from home.




We can't thank you all enough for the comments, texts, and emails. They are so encouraging. They always seem to come at the perfect time. I am starting to feel that we are at the beginning of a marathon, with so many miles left to run. We have to pace ourselves and enjoy each victory, no matter how small.
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12 comments:

Linda Vaughey said...

That is GREAT....that is just so GREAT....

Liz said...

Thanks for the update! It is fun to read that the first few days have been a sucess. Keep up the good work Jack! -Lizzy

Anonymous said...

I am following this closely. What an adventure and trial. With you as parents in his corner, Jack can't lose. You're wonderful.

I am sharing this with my 7 year old granddaughter who has been doctoring almost her entire life for a painful and vexing disorder. She is interested in all the kids she sees at the children's hospitals. She will be rooting for Jack, too.

Lindsey said...

Jack is a smart boy, Puff Cheetos are delicious! Go, Jack, go!

- Lindsey (NICU secretary)

Julie said...

Yay Jack! Off to a great start already. Mile 1 down! And way to go Jon & Jessi - thankful you are feeling encouraged!!!

Nik, Lindsay and Pierce Franks said...

Yay Jack! I am so happy to read this. So, so excited for you guys. Just remember: you made it through the marathon of an intense NICU stay. You can definitely make it through this. We are praying for you here in Charlotte. PS- We LOVE Seattle! One of our favorite places to visit.

Rebekah said...

Go Jack Man! You can do it!

Sarah Pope said...

Way to go Jack!!! Keep it up, we are still cheering you on and praying for you to get hungry and LOVE that food!

Babs said...

Yay Jack! Thanks for the update, Jessi. Sending you lots of love!

Daria said...

SO WONDERFUL! Keep up the good work EVERYONE! Sending lots of hunger your way.

Gia and fam

Lindsay said...

I love that Jack is a little bookworm. Someday, we will have to read a book together in Billings. :)

Anonymous said...

A year ago I was at the Seattle Childrens Hospital with my grandson and the path photo reminded me of the walk from the McDonald house. My prayers are with you and I am reminded how many families have less than perfect things going on and I am so aware of how blessed I am. I pray for you . ~♥~ You inspire me everyday!