Busy January Month/ Heart Awareness Month

 



  Wow! This has been a crazy month.  At the beginning of the month we went on a seven day cruise with Gene's parents and sister. We had a wonderful time visiting St. Maarten, Puerto Rico and Haiti. It was nice to get away and just relax....okay relax as much as you can with a one year old. Still, Tristan did much better than we anticipated and we look forward to going on another one soon (?). 


Next Ann's Dad and Step-Mom came to visit. Tristan had not seen the Schroeder grandparents since May 2011. We were not sure how long it would take him to warm up to them, but it seemed almost instant. We had a wonderful time spending time together. The weather was perfect for a day at the beach and checking out the manatees. Time flew by quickly and before we knew it, it was time to say goodbye. Ann's Mom and Step-Dad were supposed to visit a day later, but with battling sinus infections they decided to post pone their visit.


We look forward to the return of Gene's sister and Mom in about 2 weeks. We truly enjoy friends and family making trips down to see us and we appreciate all the time and effort everyone has made to make it happen.


Tristan is battling his third cold of the season. It's been a week already and it has only gotten slightly better. His nose is like a faucet. His demeanor and energy level is normal and his lungs sound clear so we think this is just a typical childhood cold. His solid food intake has dropped, but he is at least still taking the Pediasure...with some encouragement and convincing. He had another GI appointment last Friday (1/27/12). In three weeks, Tristan had only gained one ounce. One lousy ounce. The MD decided to chalk it up to the cold and we will revisit him in a month. We were instructed to weigh him weekly. If we did not see an increase or if he loses weight, we are supposed to call the MD to get him in sooner. Here's hoping to be above the 20 lb mark by Feb 24th!


When we got back from the cruise, Tristan also had his sedated ECHO. The results are good. His heart looks stable and no real changes to worry about. We go back in three months for another check up.


Soap box Alert....


Okay, the dreaded awareness talk. I promise, I only say this once at this time of the year. February is Heart Awareness Month. February 7th-14th is specifically Congenital Heart Defect Awareness Week. A small reminder that 1 in 100 babies are born with a heart defect. More children die of a Congenital Heart Defect (CHD) each year than all pediatric cancers combined. Yet research for pediatric oncology gets 5 times more money. But wait!!......what about The American Heart Association, don't they do a lot of good? Yes! They do a lot to promote public awareness, but The American Heart Association directs only $.30 of every dollar donated for research. The rest of it goes for administration costs, education, and fundraising. Of that $.30 only $.01 goes toward CHD research. (http://www.itsmyheart.org/chd-information/chd-facts/). No, I don't want money taken away from pediatric oncology research.  I just want more research money being used for CHD. 
  
We all hope and pray Tristan will live a long and happy life. The sad statistic is 50% of children with HLHS have a life span of about 10 years.  If Tristan lives to be the same age as I am , he will be considered ancient in the HLHS world. I am asking everyone to spread awareness so that maybe....some day...... we will know what exactly causes HLHS and can prevent it....and maybe....some day....no child will have to fight for his/her life from the moment they are born.

Below are some pictures from the last month

GI Appointment

Tristan has his second GI appointment in 2 weeks. The good new? He gained 11 oz in the two weeks! The G-tube talk has been officially tabled....for at least 3 more weeks. We'll return to the GI office the last week of January to do another weight check. We are so happy with this progress! Tristan's oral feeding is getting better with more practice. It's still at the beginning phase but the volume of food is getting higher. Instead of getting about 5-6 macaroni noodles down in one sitting, we are seeing 12-16! That is more than double from 3 weeks ago. 


His lack of talking is still an issue. He was tested a couple weeks ago and it was determined he has a true delay. We will start Speech Therapy for talking soon (not just for eating). 


Pray the positive progress continues. 


We will update about the sedated ECHO on January 17th.


(BTW--the nice bruise you see on the head is from him running into our living room end table).

Happy New Year

Gene and Tristan before church service this morning.

It's been a long time since I last updated the Blog. Right after Thanksgiving, Tristan developed a horrible cold that lasted 2 weeks. We then had a lovely visit from Ann's twin sister and sons (Alex, Isaac, and Evan). The night they left, Tristan started vomiting from a viral bug. By Wednesday evening both Ann and Gene caught it too. Thursday morning we were headed to the ER with Tristan due to his lethargy and not acting like himself. After a 3 day hospital admission, Tristan is back to 100%.  The follow up appointments after a hospitalization stay included a trip to the pediatrician, GI doctor, and the cardiologist. Everyone is concerned about Tristan's lack or slow of weight gain. The early talks of a G-tube or some other feeding tube has been broached. We will see the GI doctor again this Thursday to look at Tristan weight. The cardiologist wants a sedated ECHO to get a good look at Tristan's heart. We are scheduled for that on January 17th at 0700 at St. Mary's Hospital. The EKG at the office showed a strange/different PR interval. Tristan's cardiologist is concerned it shows the beginning signs of SVT (Supraventricular Tachycardia). His heart COULD have created a new electrical pathway, so the cardiologist is looking at a possible WPW Syndrome (Wolff-Parkinson-White Syndrome). The good news is that Tristan does not appear to show any signs of tachycardia or WPW. It all could just be a blip on the small EKG strip that was taken at the office; especially since the QRS does not appear abnormal. The sedated ECHO and the 12 lead EKG on 1/17 will give us a more definitive answer. 


Otherwise.....Tristan looks good. He is finally eating more solid foods. He is slowly but surely mastering the whole chew and swallow sequence. It's not great, but it is a whole lot better. The gagging and vomiting at the dinner table has lessened greatly. At most meals, he no longer does it all. The switched seemed to happen on Christmas Eve. All of the sudden he seem to use his teeth to break down his food and swallow. What a FANTASTIC Christmas gift to us!! The hard part is finding foods that are fairly easy to chew and swallow and also has a lot of calories in it! Now, how do we cook high calorie foods without us gaining the weight with him???!!!


We will update what the GI doc says this coming Thursday. We hope Tristan's oral intake of solid foods picks up and he will be able to avoid the whole G-tube talk.

Many blessings to your 2012 year. We pray the coming year is full for joy, love, peace, health and happiness for all of you!

Happy Thanksgiving

As Thanksgiving approaches this Thursday, we want to take time out to wish everyone a wonderful (and safe) Thanksgiving. We have so many things to be thankful for : Family, Friends, Jobs, Health...to just name a few. But most of all, we are thankful for a loving God who gave us His only son. Without Jesus, we would have nothing to be truly thankful for. 

Happy Thanksgiving from our family to yours 

Tristan's Hand 18 months old

The Christmas Season....

Tristan seeing the Christmas Tree 2011

Tristan's First Christmas 2010

I know that we said we would post a home movie of Tristan eating next....and I assure you, it is coming, but tonight we started to put our Christmas tree up. It is not completely decorated yet, but it's  beginning to look like Christmas.  


Amazing the difference in a child in one year. I see Tristan in the Exersaucer and I can barely remember that little guy.  So much growing and learning with a child this age. I am so thankful for all the pictures and videos we have of him. I love seeing the world through his eyes: the wonderment of everything around him. 

Let's Eat!

This past Monday night we arrived home from Texas around 10 p.m. By the time we got everything brought into the house and Tristan ready for bed it was around 11:30 p.m. Our night was short as we had an appointment lined up for the Oral Feeding Program. After two months of waiting there was finally an opening. The appointment was at 9 a.m. and with an over an hour drive down south, we left at 7:15 a.m. This was just an hour evaluation to decide what kind of plan is needed. Taylor, the therapist was very nice and knowledgable. We were given lots of "do this, not that" and instructed to praise when Tristan puts anything close to his mouth and turn away from him when he attempts to push the spoon away. We were given a list of oral stimulation toys to buy and approx 50 pages of ready material. She originally wanted us to come back twice a week but when she realized we were from Port Saint Lucie, she changed it to once a week due to the distance. 


Tuesday evening, Tristan started picking up small Gerber puffs and putting them in his mouth to eat. Even as recent as 4 months ago, we took these puffs and broke them into 3 pieces and placed them in his mouth. Something as small and dissolvable as the broken puff made Tristan gag. Tuesday evening he picked them up whole all by himself and ate them. Each puff took 1-2 minutes for him to gum it, but it was a HUGE step. 


Wednesday evening he ate two Gerber noodles (look like cheese puffs) from our hands. We put it to his mouth and he would bit off a piece and gum it. Tristan still does not understand the concept of chewing. We are busy practicing that with chew toys and stimulation exercises. 


Tonight, Tristan sat at the dinner table (in his high chair) for approx. 35-40 minutes and smashed and ate a baked potato. He only got about 1/10 of the potato in his mouth but he did it all by himself AND he did not gag or vomit. Once again, A BIG BIG change. We are so ecstatic! Baby steps but positive baby steps. We know a child sitting in his high chair eating fist full of pizza, pasta, and p,b&j is FAR off......but we can at least see there is hope.


Here's to hoping Tristan has turned a corner!


Next blog will be a picture of Tristan with a mouth full of food (we hope).

God Bless Texas

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Get your own

We just got home from a trip to Texas to visit Gene's side of the family. This was the first time some of Aunts, Uncles and cousins got to met Tristan. It was a busy but fun filled time which included a Missouri vs Texas A&M football game (Hooray for Mizzou) and Gene  got to preach at his home congregation and participate in the new building/church dedication service. Tristan dressed up as a Chick-Fil-A cow in honor of his Aunt Kathleen. All in all it was a wonder trip and we are so glad we got to see so many loved ones.

Playing in Granny Johnson's kitchen

(notice how Tristan crawls and his talented behind-the-back throw)