Cardiology update

Mitchell's next Cardio appt wasn't scheduled until March, but Jodi scheduled an appointment last week due to some subtle changes in Mitchell's respiratory status. Given his condition as well as the stent in the artery to his left lung, we keep a close eye on him.

To summarize his appointment, his Cardiologist was satisfied with his echocardiogram. His left pulmonary artery is narrow in comparison to the right, but appears to have adequate blood flow. His function has remained stable. His BP was also acceptable. However, his oxygen saturation was lower- 79 to 81%. He does have a mild cold with some nasal congestion- this could have an effect on his oxygen saturation, but wouldn't ordinarily effect it to this degree. She isn't eager to intervene at this point. We will continue to monitor him, with our next appt. scheduled in April. At some point, he may need to return to the cath lab to have the stent dilated. It is currently an hour glass shape, which does allow for dilatation. Otherwise, the pulmonary artery will be patched during the next surgery.

We continue to monitor his weight & are hoping to gain... 19 pounds, 4 oz. on Thursday. His growth curve has leveled off to a flat line the last few months.

His weight and oxygen saturation will be monitored at his Pediatrician's office when he receives his monthly RSV vaccination.

He continues to make progress with his activity and vocabulary. It is exciting to see new things, seems like almost daily.
Most recently is, "I (pointing at himself) attempt at love (crossing his arms), but it is followed by "me"... At least he knows he is loved! He also likes to say "Yes, ma'am which sometimes sounds like "yam", but other times like "yes am".

Thank you for your continued support!
We'll try to do a better job with the updates.

Love,
Ted, Jodi
Madison, Mackenzie & Mitchell

Christmas Pictures

Our Family on Pismo Beach in CA Dec 2010

Huff Family Extended- Dec. 23rd- Florida Christmas

Visiting my sweet Aunt Marilyn (dad's sister) in CA.

We enjoyed a nice holiday!
All of Jodi's family was together in Florida for Christmas. We celebrated Christmas Eve on the 23rd and Christmas morning on the 24th, since we were catching an evening flight to CA on the 24th.
We were able to see Ted's family & celebrate Christmas in CA on the 25th.
On New Years Eve, we visited Jodi's Aunt Marilyn, also in CA.

Prayers for Baby Ausk

I know I promised to post some recent pictures, and we do have a Cardiology update on Mitchell.
Will follow this entry with those.

We have appreciated all of the prayer & support during the last 2 years- Mitchell's diagnosis, birth & his/our journey.
We would like share the story of my cousin's baby and would appreciate prayers for Baby Boy Ausk & their family.

Baby Ausk has been diagnosed with a congenital heart defect- Transposition of the Great Arteries. We are thankful once again for an early diagnosis and the available resources to help correct the problem. If you are interested in following their blog, we have attached a link to Brandon & Karlee's family blog (Click on Title for link). Junior's anticipated arrival is June.

Thank you for your support!
Ted & Jodi

Happy 2011!

Sorry for such a delay since the last report. Thank you for checking on us, Nicole!
Mitchell is doing well. Things looked about the same with his last echocardiogram in December.
His oxygen remains high 80 percentiles, and his weight is creeping up. 19 months and 19 pounds.
I am happy to report that he isn't spitting up as much. It has been a daily occurrence for quite some time, but we have had several days recently without incident.
Mitchell is a happy boy, and we are so thankful for his progress.
Not quite walking, but getting close.
And his vocabulary seems to be getting bigger every day.
We enjoyed Christmas in FL with Jodi's family on the 23rd and morning of the 24th; then headed to CA for Christmas with Ted's family. So nice getting to see everyone, and Mitchell did very well for his first time flying.
Will post some pictures soon. Time to get some rest while the kids are sleeping!
Thank you for your continued support.
Good nIght!

Cardiology Update

Not a lot to report, but we have learned to appreciate that!
After having flu & Synagis shots & getting his feeding tube changed, Mitchell isn't too fond of going to the doctor. His cardiologist decided to wait until his next visit (mid Dec.)to do an echocardiogram. His weight is creeping up- 19 lbs. 3 oz. Although, not on the charts; his weight/length ration is proportionate. He does have Huff genes, so he may just be small.
His oxygen saturation remained mid to high 80s while monitored (for about 10 minutes). This is quite typical during the post Glenn phase. We will probably see an increase following his next surgery. Many people have been asking about his next surgery. We just don't know when it will be. They will continue to monitor his heart; and at some point, he will require additional blood flow to his lungs. Textbook says 18-24 mos. but we have noticed that other children have had the surgery around age 3. Given that he is small, I would think later might be more likely. He does have a stent in his pulmonary artery that may require a trip to the cath lab for dilation at some point. For now, he is doing well; and for this, we are very thankful!
Mitchell has started to walk (while pushing things). He is getting stronger, and doing more and more. He stays very busy, and is repeating a lot of words. He is identifying body parts; some letter sounds- really becoming quite vocal! It is very exciting to see. He LOVES his daddy and goes racing to the kitchen as soon as he hears the door open. He points in the morning and asks for his "Mi Mi". He has gotten into the routine of visiting grandma around the corner. When you ask him questions, he usually responds with a "yeah"; but shakes his head no- if you want him to eat something, or doesn't want to do what you ask. He has quite a bit of spunk, which is good- he's had to fight through a lot during his 17 months.
Thank you for your continued support & interest in Mitchell.
We feel so blessed to have him with us and try to enjoy every minute.
We hope you all enjoy this time of year & can rejoice in God's blessings.

Counting our Blessings

I spent this afternoon reading a blog- a sweet baby boy named Bowen who was born with a heart like Mitchell's. I was reminded of everything we have been through over the last 16 mos., and am truly grateful for God's blessings.
I don't think we ever shared this picture on our blog, but I think it helps to show just how far Mitchell has come.


Mitchell post-op 1st surgery May, 2009


Big Boy! Standing & clapping for himself Oct. 2010

With the exception of a minor ear infection & upper respiratory infection; Mitchell has been doing well. We are so thankful for the progress he has made!
He is very mobile- loves to get into things! His new trick is dumping out Zoe's food and water... he thinks he's quite funny. He loves to swipe things from his sister and get her to chase after him- it's followed by lots of giggling. He is standing by himself for quite a while now, but hasn't taken any steps yet. His left foot still pronates a bit, so he may require a brace once he is walking. We are just thrilled with what he can do!

He is still scheduled for therapy once a week, and we are working on eating. He's just not a fan. Happy to lick things, just doesn't want to eat them.
Hoping he will be more interested one of these days.

His next Cardiology appointment with an echocardiogram is scheduled for November 1st.

Thank you for your continued prayers & support!

Ted, Jodi, Madison, Mackenzie & Mitchell

15 months old

Sea World

After getting misted with the cooling fan

Guess it's been a while since we've given an update.
Mitchell is 15 months old today!
He weighed 18 lbs. 2 oz. at his visit this week- He is on his own steady growth curve. Can't remember his length at the moment, but it was a steady curve as well.
We have been working on transitioning his feeding. He has been having more spitting up & fussiness, but it didn't start until about a week after we started the change. It may be related to 5 new teeth (in 1 week) & a little virus. It continued even after going back to the previous formula, so we're hoping to see improvement once the teething and drainage improves.
He is not walking yet, but his mobility has increased- he crawls all over; walks on all 4s and gets into whatever he wants. He is pulling up to stand and taking a few steps holding on, but not ready to let go and stand alone.
His vocabulary has expanded- he is giving names to more people and repeating more things that he hears.
He still loves playing with balls, but enjoys everything else, too. He loves to crawl to his sisters' room and explore. He even likes to play with their baby dolls. They get lots of hugs from him, then he gives them to us to hug, too. He enjoys bubbles- he will find them and bring them to us. Then he'll say, "bubble, bubble"; followed by "more" and "pop" when he pops the bubbles.
Anytime we enter a Publix or Party City (for recent birthdays), he requests a "boon". Balloons are so much fun! We are enjoying the excitement and all of the babbling.
We recently took a trip to Sea World, and he was taken with the animals in the shows- very attentive. We are so thankful for his progress.
He is still attending Physical & Occupational Therapy for 30 minutes once a week; and having an hour of Speech Therapy each week. He is making some progress with eating, but still receiving his primary nutrition through the feeding tube.
No appointments til November! The 3rd will be an echo & cardiology appointment; then his 18 mo. check up will be at the end of the month. So nice & such a blessing to have more of a normal schedule.
Thank you again for following Mitchell's progress & for praying for him.
Hope you all have a wonderful weekend!