Sorry for the delayed post. Not sure where the time goes...
Many have been asking about Mitchell's appointment in Mobile. Thank you for your interest and concern.
We are attempting changes without any invasive procedures right now.
Changed formula, Changed and added medications. He gets less volume per feeding, so more total feedings.
We've had some better days and some days where we try to make up at night. Overall, he is doing a little better.
His last weight was 20 pounds 1 ounce, so we still need to work on that. Although he stays under the growth chart, his weight to length ratio isn't overly concerning. Would be good to gain a couple of pounds.
We have talked to his Pediatrician about doing another barium study via his feeding tube. Although, it's not as conclusive as other studies, we could visualize his stomach filling/emptying, reflux and hernia. We are wondering if the hiatal hernia is larger and affecting the volume that his stomach can handle. We know his digestion is compromised given his decreased oxygen saturation, but we are hoping to see things improve. His last oxygen saturation was 87%.
Mitchell is starting to walk more independently, and his foot seems to be gradually getting better. He is still seeing PT, OT and Speech Therapy weekly as well as a weekly visit from a Developmentalist.
His vocabulary has really grown. He will tell you his name, how old he is, and repeats pretty much everything he hears. We've lost count of all of the words. We are so thankful to see his increased independence! He LOVES his "Sissy" (Madison) and "Ninny" (Mackenzie). They are terrific big sisters. How many 9 year olds know how to work a feeding pump? We are so proud of them. Seems that God may be preparing them for something special.
Hope you all have a wonderful week!
Oh, and today is mom's Midterm. We're proud of her, too! She is taking an Origins class every M,W,F this semester at PCC. She has gotten all A's so far. At the end of this semester, she will receive her degree from Faith Baptist Bible College- finishing the 2nd of 2 classes she missed a few years back.
We previously posted a link to my cousin's blog for those interested in following their journey. They now have a Caring Bridge to keep family & friends updated at https://www.caringbridge.org/visit/babyausk/createorsignin
We are thankful that there are no additional complications identified at this point.
Mitchell is doing well with the exception of his feedings. It has been difficult to keep them down the last couple of weeks. We have tried lesser amounts; lower concentration of calories, etc... A simple guess would be that his hiatal hernia is worse. Most morning feedings come back up entirely and many others. We are thankful that he seems to tolerate them better when he is sleeping, so I have added a midnight and 4 a.m. feeding. At least we can maintain that way for now. We are taking him to a specialist at USA in Mobile on the 22nd. He will likely have a Barium Study that will allow us to see the hernia.
He is a sweet, happy boy! We love all of the new vocabulary & activities. He has started walking- as many as 31 steps at once, but crawling is still the quickest. Takes some coaxing to get him to walk. He has a brace for his left foot. Even before using the brace, we noticed that he was doing better straightening his foot, but he has been turning in at the ankle. Hoping the brace helps strengthen his left leg.
Time to get back to dinner preparation for tonight.
Wishing you all a Happy Valentine's Day!
Will update after his appt. on the 22nd.
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
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.
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
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!
