Super Henry Update: At his cardiology appointment on Friday, Nov. 15, his heart was functioning in the normal range!!!! After a very long afternoon in the Heart Clinic, Henry was crawling around (I know, in a doctors office?!?! Sounds gross, but at that point there was nothing else I could do, but let him go and keep sanitizing his hands!) gibbering away, and smiling like crazy. When Dr. Rosenthal came in to our room, he said, "Now that looks like a kid who has a heart within normal range!"
It took me a second to realize what he said, but after asking 3 more times if I heard him correctly, it sunk in. He said that it was "staggering" how much his heart had change. From the last time we had an echo at Stanford in June, which it had made the initial positive jump at that point, until September when we had an echo at Children's, to now, he said the change was remarkable. When Henry was having his echo done, I looked back a few times and thought to myself, "It looks like it is squeezing better! It looks like it is in sync more!" I have seen enough echoes and know what it looked like before to know that it looked different. And that is exactly what Dr. Rosenthal said.
He has told us before, but reiterated that Barth boys typically respond well to medication treatment. So, Henry will remain on max/goal doses of all of his medications indefinitely. Dr. Rosenthal said that even if Henry continues to do well, that he will still keep him on the medicines, knowing that he could decline if taken off. The onimous "honeymoon phase" that Barth families and doctors describe of the heart getting better for a period and then declines again still looms. Dr. Rosenthal said that the honeymoon phase could last 5+ years, which actually sounds like a long time to me at this point. We got the clearance to try to get Henry off of his feeding tube, knowing that we have 6 months of not having to worry too much of the effects it could have on his heart.
It was nearly 1 year ago that we went to Stanford for the first time to meet with the transplant team, to get Henry established as a patient there before we were in desperate need. Well, this appointment couldn't have been more opposite in the mood and the information. I don't think that many thought that his heart would ever get to this point. We are so very thankful! PLEASE join us in rejoicing and praising God for this improvement! Thank you, thank you, thank you for all of your prayers, thoughts, and encouragement this last year and half. We know what a prayed for little boy Henry is, and we are all forever grateful. These results do not mean that he is healed, or that our journey is over by any means. His diagnosis remains the same. It will most likely be road of many ups and many downs, but for this moment, as long as it lasts, we are so blessed to be "up". Please don't take him off of your prayer list...praise the Lord first, and then continue to pray for strong steady growth in all aspects, continued stableness, and that he would be asymptomatic in the other areas that his syndrome can affect.
We had the evaluation meeting with Henry's therapists last week...it went really well. He continues to qualify for services, which is great news. We will keep all sessions as is for another 6 months. He is obviously progressing, and we all hope to get him caught up as fast as possible. It is amazing though the change in Henry that John and I can see. Over the past few weeks he has gotten more energetic, feisty, determined, and playful. It's no coincidence that this is very closely tied to his heart function and the fact that he is feeling better. He is most energized by his evening bath...after bath he is radiating excitement, confidence, and energy. We have been having our practice walking sessions right after he gets out, in diaper only :). He loves to play ball, get tickled, give kisses, play peek-a-boo, and crawl around. Lately, he has been coming up to me when I am standing (usually in the kitchen) and pushing his head through my legs. Then he wiggles his body through and crawls around them, rubbing his head on me like a little kitten. He is doing better at communicating to us what he needs/wants with a little reaching and some sounds. He wants to try and feed himself, with a spoon or by picking the bowl entirely up and dumping it onto his mouth.
Super Henry gets the Super Hero of the Year Award, that's for sure. I told him as I put him to bed the other night, "I am so proud of you, Henry. You did it! You have been so strong, and so brave, and worked so hard. I am so proud."
Super Grady also gets the Super Brother award for the year...He has always been so helpful, so sweet, patient, and a prayer warrior for his little brother; never once acting jealous or angry with the "attention" Henry has needed. Thank you, G.
Super Grady also gets the Super Brother award for the year...He has always been so helpful, so sweet, patient, and a prayer warrior for his little brother; never once acting jealous or angry with the "attention" Henry has needed. Thank you, G.
October...We made our first big trip as a family of four to Texas and Oklahoma last month. It had been tooo long! Henry and I made a quick weekend trip to Fort Worth last year when he was just barely 8 weeks old (before his diagnosis) for dear friends' wedding. Grady, John and I had not been to Tulsa in 2 years, and John hadn't been to Fort Worth in over 3 years! We flew into TX and spent 5 days in Dallas/Fort Worth, then drove to Tulsa and spent another 5 days there. It was a good trip! To be quite honest we were pretty nervous about going...knowing there were alot of people to see and alot to do, with 2 little ones and alot of stuff, in a "strange" place, with a 2 hour time change, at the beginning of cold and flu season. But all in all, it was great.
Texas: We had some good quality time with our friends in Fort Worth. Grady had a few slumber parties at WhiWhi and Uncle Adam's, went to a really cool park, bonded with Fiona the dog, and got to be completely spoiled and loved on. We had a picnic with all of our friends and their kids. John and Grady got to see TCU's new stadium and run around on the field. We did not eat enough TexMex. Henry actually slept really well in Texas (not so much in Tulsa), which I was not expecting, but pleasantly thankful for. Grady got sick a couple of days in...fever, runny nose, and cough (we are STILL trying to get rid of his cough!). Henry got it too, but his has manifested a little differently...he didn't have as bad of a fever, but his nose ran for 3 weeks. And he has a little cough too. WhiWhi had 2 new trains, Caitlin and Connor, waiting for G in Dallas that he talked about for weeks leading up to our trip and has now made them his favorite (next to James).
Tulsa: We had a very FULL weekend with family. Spent a lot of time at Grandpa Charlie and Grandma's house with grandma's and grandpa's, aunts, uncles, and many cousins. Grady had fun with all of his "cousins". I'm really not sure what they all are to each other...we call them cousins here on the Branagh side too, but they are our cousin's kids??? Whit, Adam, John, and myself went to the OSU vs. TCU game in Stillwater with my Grandpa and cousins. It was OSU homecoming weekend and so fun to be on a big campus like that with "the best homecoming in the country". TCU played pretty awful and lost, so it wasn't a great game for the Horned Frogs, but it was pretty special to get to sit next to my 90 year old Grandpa and watch the game wearing opposing colors. I would venture to say that Grandpa is one of the oldest, most loyal, devout OSU fans, and he still managed to tactfully and lovingly support my family's team and even got Grady and Henry new purple TCU shirts. I love him! Hopefully it won't be so long before the next time we get to make the trip again. Missing family and friends already!
Halloween... When I asked Grady at the end of September what he wanted to be for Halloween, he very quickly decided to be a wolf. Not the Big Bad Wolf or a scary wolf. A nice wolf. I can't remeber if I have mentioned it on the blog, but G has had an obsession (much like Santa Claus last year) with wolves. I'm not sure how it originally started, but he loves (and owns, has checked out from the library, or Nana owns) every book ever written about wolves, particularly the Three Little Pigs and the Big Bad Wolf. And let me tell you, there are actually many stories and versions on this subject. It's a love hate relationship though. He can read about, talk about, pretend, and even dress up like a wolf. However, it is the one thing (it used to be tigers) that keeps him up at night, gives him scary dreams, and makes him fearful in his room or the dark alone.
I have recently noticed how well the little guy is processing things...you can just see his mind working and thinking. He ponders things, and remembers situations and feelings and recalls them; he is starting to be inquisitive about things that he normally would have just taken for face value. Now he asks real questions, not just why. All this to say, he is really growing up and is super smart. He just realized that the Big Bad Wolf eats the pigs in some of the versions (we had been careful in the past to not mention that part) and is often afraid that a wolf is going to come down our chimney and eat him. It sounds silly, but it is so sad. Trying to explain fantasy, pretend, and magical things to a literal 3 year old, who has a very advanced imagination, can be difficult.
I got super lucky and got a great deal on this darling wolf costume and didn't really have to make anything this year! And he is still loving his wolf costume...he puts it on several times during the week, sometimes to play and sometimes just to watch something;) He had fun trick-or-treating...we have gone the last couple of years with our neighbors and a group in our neighborhood, all with younger kids. Super Henry had fun too. He rolled around in style in his Super Blue Car, but his night ended a little early due to a throw up incident. Good thing is, it never bothers him and he will never remember. (Speaking of Super Henry, we received very good news in regards to his heart on Friday...see below!) Halloween week included our annual Branagh Halloween party, pumpkin carving, decorating cookies, and a trip to see Daddy and Papa at work with the Stone girls. Our jack-o-lantern idea was purely Grady. When we sat down to decide what to do, he said, "A hyena mouth (a smile with pointy teeth), a round nose, and round eyes. No eyebrows." Pretty good, I'd say!
I got super lucky and got a great deal on this darling wolf costume and didn't really have to make anything this year! And he is still loving his wolf costume...he puts it on several times during the week, sometimes to play and sometimes just to watch something;) He had fun trick-or-treating...we have gone the last couple of years with our neighbors and a group in our neighborhood, all with younger kids. Super Henry had fun too. He rolled around in style in his Super Blue Car, but his night ended a little early due to a throw up incident. Good thing is, it never bothers him and he will never remember. (Speaking of Super Henry, we received very good news in regards to his heart on Friday...see below!) Halloween week included our annual Branagh Halloween party, pumpkin carving, decorating cookies, and a trip to see Daddy and Papa at work with the Stone girls. Our jack-o-lantern idea was purely Grady. When we sat down to decide what to do, he said, "A hyena mouth (a smile with pointy teeth), a round nose, and round eyes. No eyebrows." Pretty good, I'd say!
My sister posted this on Facebook a couple of months ago, but I had to put it here. It's me and Whit about 30 years ago on Halloween;) I am probably right about Grady's age, and I actually remember this! I was a Butterfly princess several years for Halloween...it was my favorite!
Funny Grady things:
- We have been playing some fun games with Grady lately. They usually happen around the dining table. It started with John giving Grady clues to try and guess what he was thinking of. It starts like this, "I'm thinking of a thing..." and then you give clues. Not only is G good at guessing, he is really good at doing the clues to us! I was amazed at how he could put it together so well. The cutest one he did was this weekend and it went like this..."I'm thinking of a thing...it's really beautiful and really pretty...it's a girl...she lives in this house...she sleeps against to you (daddy) and sleeps really good...she has slippers...IT'S MOMMY!!!!" Melt my heart.
- Another funny thing that I don't want to forget is his bedtime routine right now. He always takes a bath before bed, but doesn't always wash his hair. He will yell from the tub if I'm not in there, "Hair, yes? Or hair, no?" Then, after he gets in bed he always requests from me, "Can you turn my engines off and give me a arm 'assage'? And get me cold ice water, please!" Turning his engines off means that you pretend to turn knobs all over his body to shut his engine off. It symbolizes that it's time to settle down and go to sleep. Unfortunately, the boy still has such a hard time falling asleep sometimes! And he must get a massage of some sort...it used to be foot, and now it is arm.
- Any that connects to something else, is "coupled up". This is a train term that is usually talking about the cars, tenders, and engines being connected to each other. He says it often and about anything! Tonight it happened to be about Henry being coupled up to his formula, i.e. his tube connected to the pump at bedtime :)
- I have now given him full reign to watch any of his Christmas movies, which he has been asking to watch since last Christmas! I have broken down and let him watch a few of them throughout the year. If I didn't put any limits on them, he would watch a Christmas one everyday I think. His favorite is The Polar Express. But for some reason this year, he calls it "Polican Spress".
"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:4-7
